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Headquartered in Chicago, Beyond OCD offers local support to residents of the city and surrounding suburbs. If OCD touches your life, we are here to help!

Treatment Referrals
If you seek therapy for yourself or a family member or friend in the Chicago area, contact us for provider recommendations.  Send an email to info@BeyondOCD.org or call 773-661-9530 to discuss your options.

Support Group
We sponsor a self-help group in the Chicago metro area for adults facing OCD, OCD spectrum disorders and co-occurring depression or anxiety.  Group meetings are facilitated by a mental health professional, and are held in the Lakeview neighborhood.  Get information.

A Caring Voice on the Phone
Our Helpline is open to callers Monday through Friday from 9 AM to 4:30 PM. Beyond OCD was created by and is run by people who have OCD, love someone with OCD, or treat OCD. We understand your needs.  Call us at 773-661-9530.

OCD Live Forum
Beyond OCD presents events in the Chicago area featuring OCD treatment providers, authors, and people with inspiring personal stories about winning their battle with OCD. After the presentations, attendees and presenters have time to mingle and get to know one another.

News on Treatment and Research
Keep informed on current OCD matters with our e-newsletter. Sign up in the blue box on any page of our web site, www.BeyondOCD.org.

Speakers Bureau
We set up speaking engagements for schools and organizations in the Chicago area. Speakers include individuals who share their real life struggles with and triumph over OCD as well as treatment providers who are expert in the treatment of OCD.  Email info@BeyondOCD.org.

Media Resources
If you are with the media and wish to interview a local OCD expert or a sufferer who has succeeded in treatment, we will connect you with press resources.  Call Ellen Sawyer, executive director at 772-661-9530 or email esawyer@BeyondOCD.org.

Giving Back
Beyond OCD is funded entirely by donations and many of its programs are carried out in large part by volunteers. We are especially in need of volunteers with PR, social media, graphic design, copywriting, computer and fundraising skills. Call 773-661-9530 to discuss these and other volunteer options.

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Clergy can play an important role in providing guidance, encouragement and recommendations to OCD sufferers.

Where to Start

As a member of the clergy, you bring comfort to people when their lives are disrupted by the unexpected: emergencies, disasters, sicknesses and the loss of loved ones.  Because you are also the person to whom many people turn when they are overwhelmed by life's circumstances, it is entirely possible that individuals who are battling OCD – or  symptoms of what may be OCD – will come to you for help.  In some cases, family members or friends of the individual who is suffering may contact you.  Or perhaps someone has already reached out to you for help.  You can be the one to bring hope to individuals in crisis.

One of the most important first steps you can take to help someone struggling with OCD or potential OCD is to become knowledgeable about the disorder.  By understanding what OCD is, symptoms of the disorder, and appropriate treatment, you can help guide struggling individuals onto the road to recovery.

What is OCD?

OCD is an anxiety disorder, which, like all anxiety disorders, is neurobiological in nature.  The hallmark of OCD is the presence of obsessions and compulsions which take up at least an hour a day – but usually longer – and cause significant distress.

Obsessions are intrusive thoughts, fears, worries, or urges that cause anxiety or discomfort for the individual.  Virtually everyone has intrusive or disturbing thoughts or worries from time to time.  But people who have OCD are unable to stop these unwanted thoughts or urges; they can't just dismiss them like people who don't have OCD.  To reduce the anxiety or discomfort created by the obsessions, people with OCD engage in repetitive mental or physical acts (compulsions, or rituals) that make them feel better temporarily.

Researchers have found that functioning in certain areas of the brain is different in individuals who have OCD compared to those who don't.  Abnormalities in neurotransmitters – the chemical systems that send messages between brain cells – have also been found.  In addition, research has indicated that genetic, behavioral, cognitive, and environmental factors may also play a role in the onset of OCD.

This web site has information that you can use to learn about the disorder and its treatment.  The sections that should be most useful to you are shown below and link directly to those sections for your reference:

• OCD Facts section
• Individuals section
• Parents section
• Friends and Family section

You can also refer to the site map to find specific information for family members, parents helping adult children or the sections especially written for teens.

When OCD and Religion Collide

Scrupulosity is a type of OCD that focuses on religion or morality.

One type of OCD that is characterized by obsessions and compulsions related to religious or moral issues is known as Scrupulosity.  People with religious Scrupulosity experience overwhelming obsessions about sinning or not being “holy enough,” as well as fears of committing inappropriate or violent acts that run contrary to their religious beliefs.  To reduce the distress associated with these obsessions, people with this form of Scrupulosity perform rituals such as praying, going to confession or  attending religious services repeatedly.

Scrupulosity may also involve irrational moral obsessions and corresponding compulsions, or rituals.  Individuals with moral Scrupulosity may fear getting in trouble for making an error (which either hasn’t actually happened or is unlikely to happen) for which they would be punished.  Thus, a child who receives help on homework from her parents may feel as if she has cheated and therefore throws the homework away to reduce her anxiety. 

As a member of the clergy, you can play a pivotal role in helping to determine whether someone’s behavior is what it appears to be – a truly devout commitment to one's faith – or whether it’s indicative of a more serious situation: a form of Obsessive Compulsive Disorder.  Learn more about Scrupulosity

Is Effective Treatment Available?

Fortunately, a very effective treatment called Cognitive Behavior Therapy (CBT) is available for OCD.  CBT, which is the treatment of choice for OCD, involves the use of two evidence-based techniques: Exposure and Response Prevention therapy (ERP) and Cognitive Therapy (CT).  ERP is a special therapy in which OCD patients are placed in situations that expose them to their obsessions and gradually prevent them from performing their typical rituals.

Cognitive Therapy, the second technique involved in CBT, helps an individual identify and modify patterns of thought that cause anxiety, distress or negative behavior.  In other words, CT helps patients understand that the brain is sending “error” messages.  Through Cognitive Therapy, the person learns to recognize these errors and confront the obsessions by responding to them in new ways.

In some cases, physicians prescribe medication to ease the symptoms of OCD.  More about CBT therapy can be found in the OCD Facts and Individuals sections of this web site.

Guidance for Those with OCD

A recommendation to undergo CBT therapy for OCD is taken seriously when it comes from a trusted member of clergy.

A religious leader can positively influence the life of someone who has OCD.  Your recommendation and encouragement to undergo Cognitive Behavior Therapy are likely to be taken more seriously by an OCD sufferer than families’ or friends’ suggestions to get treatment.

When you counsel people who have OCD (including Scrupulosity) or their families, your objectivity and compassion will be crucial in terms of helping them determine the right course of action.  People and families affected by OCD are often so consumed and overwhelmed by the disorder that they can’t think clearly about how to approach the situation.  They value the strength, support and insight you can provide to help them overcome OCD.  Learn more about OCD counseling.

Treatment Resistance and Recovery Failure

Getting effective treatment can help most people with OCD achieve substantial relief from their symptoms and regain significant control over their daily lives.  Unfortunately, getting the appropriate treatment, sticking with a treatment plan and maintaining treatment gains can be challenging.  It can be extremely frustrating when a person who suffers with OCD refuses to get treatment, or when treatment fails. You may be called upon to give guidance when these situations occur. Knowing what to expect ahead of time can make a big difference in your ability to provide assistance.

Learn more about treatment resistance and recovery avoidance

When Financial Assistance is Needed

You may find that some people who seek your help are unable to afford treatment for OCD.  Those without health insurance or whose insurance policies do not fully cover mental health care sometimes struggle to get the treatment they need.  Learn more about how to counsel on financial matters concerning OCD.

More Resources for Clergy

As awareness of OCD continues to grow, more resources are becoming available to help professionals, including clergy, understand the disorder and learn how to encourage people to get into proper treatment programs.

Books

A book published specifically for clergy is Obsessive-Compulsive Disorder: A Guide for Family, Friends and Pastors by Robert M. Collie, a pastoral counselor who is also a clinical social worker.  This book includes both therapeutic and pastoral information, and may be especially useful for pastors, pastoral counselors, priests, rabbis, other ministers and lay ministers. 

Another helpful book is Understanding Scrupulosity: Questions, Helps and Encouragement by Rev. Thomas Santa C.Ss.R.  It provides specific answers to questions and concerns related to sin, confession, self-worth, sexuality, prayer, God's forgiveness and other issues. 

For OCD sufferers of the Jewish faith, Avigdor Bonchek, Ph.D., an ordained Orthodox rabbi and clinical psychologist, has written Religious Compulsions and Fears: A Guide to Treatment.  It describes the fine line of separation between scrupulous adherence to religious law and finding oneself tethered to obsessions, compulsions and fears, and would be useful to OCD sufferers, family members, rabbis, teachers and therapists.

A book about Scrupulosity for OCD sufferers is The Doubting Disease: Help for Scrupulosity and Religious Compulsions by Joseph W. Ciarrocchi, Ph.D.

Other Resources

We have reviewed web sites and other books that may be helpful to you. These are listed in the More Resources section of this web site.

There are also first-person accounts of living with OCD and gaining relief from CBT in the Personal Stories section of this web site.  These are inspiring stories of success that might help OCD sufferers you counsel realize there is effective treatment and hope for their own recovery or for that of a family member or friend.

In addition, some people benefit from attending support groups to hear of others’ experiences related to gaining control over OCD or to find out how to help a loved one with OCD.  Information about support groups is available in the More Resources section of this web site.

Read Personal Stories

Go to More Resources

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Even if you think you’ve already tried everything possible to get rid of OCD, you can make changes now that really can help bring relief to the whole household.

When someone in your family has OCD, everyone is affected. It’s natural to have strong emotions about this intruder in your home.  Feelings can include frustration, resentment, anger, embarrassment and exhaustion from trying to live in a household where OCD seems to be in control.

If you are at a point where you only suspect that OCD may be the problem, it’s important for your loved one to have a thorough evaluation and get an accurate diagnosis so treatment can begin – whether for OCD or another mental disorder that may be causing distress.  If your loved one is undergoing OCD treatment, you can play an important role in supporting his or her recovery.  If he or she is diagnosed with OCD but refuses to get treatment, it will be important for you to learn why some people avoid treatment and how you may be able to encourage your loved one to seek help.

You already know there are no quick fixes for OCD.  But even if you think you’ve already tried everything possible to get rid of OCD, there are some changes you can make now that may help bring relief to the whole household.  And once you see some of these strategies working, you’ll be able to experience more positive emotions, including optimism, hope and feelings of success.

What’s Behind The Problem of OCD

It’s extremely important to realize that people with OCD aren't performing rituals and engaging in other behaviors deliberately to frustrate, upset or annoy you or others.  Individuals with OCD experience obsessions, which are persistent, uncontrollable thoughts, impulses, or images that are intrusive, unwanted and disturbing.  Obsessions cause anxiety or discomfort that significantly interferes with their lives. To relieve the distress caused by obsessions, people with OCD feel compelled to perform repetitive actions called compulsions, or rituals.  For example, a person with an obsessive fear of intruders may check and recheck door locks repeatedly to ensure that no one can get in.

OCD is an anxiety disorder, which, like all anxiety disorders, has a neurobiological basis.  Your loved one’s brain isn’t functioning in the same way as the brain of an individual without OCD.  The brain of people with OCD is constantly sending “error messages," leading to constant uncertainty, including worries and fears that go well beyond what most of us will ever experience.  Their anguish is real.  Individuals with OCD are no more at fault for having the disorder than those who have other medical conditions such as diabetes or asthma..  

Regardless of how frustrating it may be for you to watch your loved one perform rituals, repeatedly seek reassurance or even bark orders at you or other family members, he or she doesn’t do this on purpose.  And people with OCD can’t stop just because you want them to.  In fact, if they could just stop their behavior, they’d be the first ones on the face of the planet to stop!  When OCD is present, the person isn’t in control anymore – OCD is.  

One of the most important ways you can support your loved one is by learning about OCD.  You can learn more about OCD in the OCD Facts, Individuals or Parents sections of this web site.

Your Role as Change Agent

There are a number of other ways you can help a family member with OCD.  First and foremost, you can help your loved one find appropriate treatment for OCD and encourage him or her to actively participate in the therapy process.  Effective treatment is the most important step in gaining relief. 

Learn how to find the right therapist.

It’s also very important that you try to establish a positive emotional climate in the home.  How you communicate with your loved one as well as the level of support you provide cannot be overemphasized. 

You can also help the person with OCD when you stop accommodating the disorder.  Family members sometimes participate in their loved one’s rituals, provide constant reassurances or help the person with OCD avoid feared objects, places or people.  In other words, you accommodate OCD behavior.  Sometimes you do it just to “keep peace in the family” or because it seems like the only way you can help the one you love.  You may desperately want to stop being involved in the OCD behavior your family member has drawn you into.  But you’ve stayed involved, fearing that stopping would make the OCD worse.  OCD is a master at manipulating the person who has the disorder and, in turn, his or her family.

Today, OCD treatment experts know that it is important to involve families in Cognitive Behavior Therapy (CBT).  Family members can greatly enhance their loved one’s chances for recovery by not accommodating OCD.  You can’t stop all at once, of course. But a cognitive behavior therapist can help you gradually change the way you respond to OCD.

Learn more about how to stop accommodating OCD behavior

Another very important facet of your role as a change agent involves taking care of yourself.  Research has indicated that family members report some – if not severe – distress adjusting to a loved one’s OCD.  And yet they seldom seek the professional help they need; instead, they usually focus on the individual with OCD.  Living with or caring for a family member with OCD can be extremely stressful, and it’s critical that you take care of your own physical and psychological needs.  Be sure to seek out help when you need it; it’s a sign of strength, not weakness.  And when you’re less overwhelmed by frustration, guilt, and other negative emotions, you are in a better state of mind and will actually be more effective in helping your loved one.

You may find it helpful to talk with your loved one’s cognitive behavior therapist for guidance or seek help on your own.  You may also want to consider attending a local OCD support group that is open to family members or an online group.  Talking with others who have had similar experiences and learning about how they have approached family difficulties can be extremely helpful, if not therapeutic.

The CBT Therapist’s Role in Restoring Family Life

When you stop accommodating OCD, you will maximize your loved one’s opportunity to gain control over the disorder and help your family return to normalcy.  But family members usually need guidance on how to stop reinforcing and enabling their loved one’s OCD.  

The cognitive behavior therapist who is treating your loved one should be able to help spouses, siblings, parents or extended family members learn to respond more appropriately to the person with OCD.  In fact, many cognitive behavior therapists work with families to develop a written agreement known as a “family contract” or “behavioral contract.”  It’s a “roadmap” you follow when you agree to work together as a team to fight OCD.  When all members of the family agree upon the specific OCD behaviors they’ll stop accommodating, the chances of reducing symptoms of OCD can dramatically increase.

Learn more about family contracts

No one said making changes would be easy.

Managing Emotions

Living with and/or caring for a loved one with OCD can be extremely stressful.  When OCD seems to have control over a household, emotions can fly high.  And when your loved one is undergoing Cognitive Behavior Therapy – which involves a great deal of hard work – it’s very common for anxiety levels to increase not only for the person undergoing therapy but also for family members.  And increased anxiety may lead to heightened stress, frustration, conflict, exhaustion and feelings of failure for everyone in the family.  Fortunately, there are some strategies you can use to help keep emotions in check.

Learn more about managing emotions at home

Risks and Rewards for Couples

When you or your partner has OCD, it can place an enormous strain on your relationship. Instead of enjoying the strong emotional bond of a loving relationship, you may find yourself in the throes of confusion and disappointment.  Unfortunately, some partners find the stress caused by OCD simply too much to bear, and the relationship does not survive.

The risk of emotional pain or exhaustion, as well as the potential risk of irreparable damage to the relationship, make it imperative that the person with OCD be evaluated and treated as soon as possible.  With appropriate treatment, the chances of your relationship getting back on track are greatly improved.

Learn more about the spouse’s role in overcoming OCD

Behind Relationship Troubles

OCD in and of itself can have a devastating impact on a relationship.  But OCD can present many other challenges in a relationship, as well, including threats to physical and emotion intimacy, and interference in social activities and relationships with others, not to mention fears about the future.  You may also be experiencing any other number of daily stressors in your relationship that all couples face (e.g., financial difficulties, job-related concerns).  Therefore, if your loved one has OCD, and you’re experiencing relationship troubles, it’s a good idea for you to have a conversation with his or her therapist, as well.  By taking a step back and looking at the whole relationship – not just the OCD – the therapist can teach you strategies for rebuilding your relationship.

Learn more about getting to the cause of OCD-related relationship difficulties

Go to OCD Facts section

Go to Parents section

Read personal stories of successful OCD treatment

Contact Beyond OCD for more information

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If your child has difficulty with treatment, here are some possible causes -- with suggestions for how to improve the chances for success.

Most children and adolescents who undergo a course of Cognitive Behavior Therapy (CBT) for OCD experience a significant reduction in symptoms.  If your child doesn’t do well in treatment, you should consider these possible obstacles to success:

• Coexisting (Comorbid) disorders:  A mood disorder such as major depression or bipolar disorder, alcoholism or substance abuse, AD/HD, anorexia, or any other coexisting disorder can interfere with your child's success in therapy and may require separate treatment.  An effective therapist will be able to design a treatment plan that takes into consideration all of the difficulties a child exhibits -- including those related to OCD.

• Poor communication with therapist:  Open and honest communication about the exact nature and frequency of obsessions and compulsions is essential for the therapist to design effective exposures.  Children often fear revealing all of their symptoms, either because they feel ashamed of their thoughts, or because they believe it would be impossible for therapy to help them with obsessions or compulsions that are particularly difficult.  If  your child keeps certain aspects of his or her OCD secret, it will impair the therapist’s ability to help him or her  overcome OCD. Therefore, you should encourage your child or teen to open up to the therapist and be very honest about what is bothering him or her.

• Insufficient exposures:  Exposures must be sufficiently challenging, and it’s imperative that your child complete “homework” – daily exposures exercises – between therapy sessions.  If your son or daughter doesn’t perform the assignments daily because he or she feels the homework is too difficult to accomplish, therapy may fail.  Talk with the therapist so a program can be designed that will allow your child to succeed.  And remember that threatening your child with hospitalization if he or she doesn’t improve is NOT an effective way to motivate a child or teen to work hard in therapy.

• Therapy sessions too infrequent:  Therapy sessions are generally scheduled weekly.  But your child may need more frequent sessions or, if OCD is severe enough, treatment in a residential setting.  Talk with the therapist to determine if more frequent sessions are necessary. 

• Improper location for therapy:  Therapy sessions may be more effective if they are held in locations that trigger obsessions and compulsions – in a child’s home or school, for example.  Some therapists will conduct sessions out of the office, by telephone, online or via webcam technology, such as Skype.

• Medications:  If your child’s treatment provider has recommended medication in conjunction with CBT, keep in mind that medication is not immediately effective; it may take 10 to 12 weeks at therapeutic doses to be effective.  Also, the dosage may need to be adjusted until the right level is found.  Furthermore, a child may experience no improvement with one OCD medication, only to find improved results when a different OCD medication is tried.  Good communication with your child’s therapist – and patience – are needed to find the right medication, or combination of medications, that will be effective for your child.

• Family interference: Family members who participate in a child’s or teen’s compulsive rituals, provide reassurances or enable avoidance behavior can unintentionally sabotage success in therapy.  Your child’s therapist may instruct you and other family members to refrain from engaging in certain behaviors that can have a negative effect on your son’s or daughter’s treatment, even though the behaviors are well-intended.  In some cases, a parent (or other family member) can be trained to act as a “coach” to keep track of exposures and discourage behavior by others that perpetuate the rituals.

• Wrong choice of therapist:  Your child may not succeed with a particular therapist because the personality fit may not be right, or the therapist may not design challenging, appropriate exposures.  The professional may also lack specific knowledge and/or experience in treating OCD.  The good news is that your child may enjoy excellent results with another therapist.  Always ask for a second opinion, request a referral or interview other therapists to find a good match.

• Inappropriate treatment:  CBT, sometimes accompanied by medication, is the only treatment for OCD in children and adolescents that is supported by scientific evidence.  At this time, there is insufficient evidence to support the use of treatments such as hypnosis, herbal or homeopathic remedies, psychoanalysis, relaxation therapy, eye movement desensitization reprocessing (EMDR) or dietary changes.  It’s important to note, however, that meditation, yoga and exercise can complement formal treatment for OCD.  Many people find these tools to be extremely effective in helping reduce anxiety and facilitating the treatment process.

• Lack of support:  Talking to others who have learned to master their symptoms can encourage a child with OCD to undertake the challenge of therapy and boost the likelihood of success.  Parents also can learn from the experiences of other parents.  Joining a local support group, participating in an online support group or contacting Beyond OCD or the International OCD Foundation are good ways to find people with similar experiences.  Note: Non-therapeutic support groups can be extremely beneficial, but they should complement – not replace – appropriate treatment.

• Recovery avoidance:  Some children and adolescents find OCD treatment sessions to be very difficult and CBT homework exercises to be stressful, if not overwhelming.  Successful treatment depends on your child’s therapist being able to plan and construct a challenging, but not unreasonably difficult, treatment program.  The therapist should also design a manageable schedule for your child’s particular situation and tolerance level.

• Embarrassment:  Some children – especially older children or teens – may be concerned or embarrassed about “having to go to therapy” or “having to go to the doctor.”  Peer pressure to  “fit in” may already be putting pressure on your child, and being perceived as “different” or “mentally ill” can increase stress.  Stress, in turn, can worsen OCD symptoms.  If you believe embarrassment is the reason your child may not want to attend sessions or do ERP homework, talk with the therapist (with input from your son or daughter, as appropriate) to brainstorm ways to help your child commit to therapy.

Back to Helping A Child Who Has OCD

¿Tienes TOC? – Una guía para adolescentes está escrita para adolescentes que han sido diagnosticados con TOC, o que han observado comportamientos inusuales similares a los del TOC o pensamientos que están afectando el rendimiento escolar, las amistades, las actividades extracurriculares o las relaciones familiares.  La guía brinda información práctica acerca del trastorno y su tratamiento, y asegura al adolescente que no está solo o sola. También es popular entre padres que quieren brindar información a un adolescente en su hogar que pudiera estar padeciendo de TOC.

Cómo ayudar a su hijo es un recurso para padres cuyo hijo ha sido diagnosticado con TOC, o cuyo hijo está manifestando síntomas que pudieran ser TOC.  Esta guía puede ayudar a los padres a entender la enfermedad, sobrellevar el comportamiento de un hijo, conseguir terapia efectiva y jugar un papel proactivo en el tratamiento.

Superando el TOC: Una guía para estudiantes universitarios aborda las características especiales del manejo del TOC en un campus universitario. Las tensiones, como estar lejos del hogar, de la familia y posiblemente de un terapeuta en el que se confía, el ajuste a la vida en la residencia estudiantil, las relaciones nuevas y la presión de las clases y de las actividades escolares presentan desafíos nuevos en cuanto a cómo manejar los desencadenantes del TOC. La guía explica cómo conseguir tratamiento y apoyo local, entender las facilidades actuales que brinda la ley y adaptar estrategias de enfrentamiento exitosas en un entorno nuevo.

Alivio para el TOC es para aquellos que tienen TOC y para las personas que se preocupan por ellos.  La guía incluye información detallada sobre síntomas, mitos y realidades, trastornos relacionados y tratamiento que puede mejorar considerablemente la calidad de vida de los que sufren de esta enfermedad.

Nuestra serie de guías sobre TOC se desarrolló para brindar información abarcadora y alentadora sobre TOC. Aprenda cómo mejorar su vida mediante tratamiento y conviértase en un agente de cambio poderoso en su recuperación.

Puede descargar cada guía sobre TOC en formato PDF, o puede ponerse en contacto con nosotros para recibir una copia impresa gratis de la guía o las guías que seleccione.

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• Alivio para el TOC – Una guía para personas con Trastorno Obsesivo Compulsivo
• Superando el TOC: Una guía para estudiantes universitarios
• Cómo ayudar a su hijo – Guías sobre el TOC para padres
• ¿Tienes TOC? – Una guía para adolescentes

Children who have OCD didn’t do something to cause it.  And it’s important to know that parents don’t cause a child’s OCD, either.  It isn’t caused by the way parents talk with their children or don’t talk with them.  It’s not caused by how children are disciplined or not disciplined or how they were toilet-trained.  It doesn’t matter if both parents work, if mom is a stay-at-home mom or if the parents are divorced or remarry.  Even the worst parenting in the world doesn’t cause OCD.  OCD is a neurobiological disorder, not a condition that is caused by action or inaction.

However, if a person is genetically predisposed to OCD or has a subclinical case of OCD, a stress “trigger” or trauma may precipitate symptoms.  For someone who already has OCD, stress or a transition may worsen symptoms.

Here are some common misperceptions about the cause of OCD:

• STRESS. Stress doesn’t cause OCD, although symptoms sometimes begin after a severe trauma, such as the death of a loved one.  Other stress triggers include the birth of a sibling, a marriage or divorce, a move to a new home or new community, a transition to a new school or new school year, or even a natural disaster, such as an earthquake or tornado.  And if OCD symptoms are already present, stress can worsen those symptoms.  Anxiety, fatigue and illness – even the stress associated with positive events, such as holidays and vacations – can affect OCD.
• ILLNESS. Childhood illnesses do not cause OCD, although there is growing evidence that severe bacterial or viral infections such as strep throat or the flu may trigger the sudden onset of symptoms in children who are genetically predisposed to OCD.
• PARENTING. As previously indicated, there is no evidence that the way parents guide or discipline their children causes OCD.  Parents should not be blamed when a child exhibits symptoms of this disorder.
• FAMILY ACCOMMODATIONS. Although family problems don't cause OCD, families may unintentionally have an impact on the maintenance of OCD symptoms.  To decrease the distress a person with OCD experiences, parents and other family members frequently accommodate OCD behaviors.  For example, they may provide verbal reassurance when the child requests it, conduct rituals with or for the child or provide items he or she needs to carry out rituals, such as soap for hand washing.  Although they usually mean well, family members may actually be enabling the individual with OCD, and symptoms worsen, rather than improve.  OCD symptoms may also worsen if family members react to a person’s rituals with criticism or hostility.  Parents and other family members need to develop special skills to help their loved one overcome and manage the disorder.

Beyond OCD ’s guide, How to Help Your Child, is a good source of advice, and Beyond OCD can help parents find effective treatment for their child.

Order or download a copy of How to Help Your Child

Back to Helping A Child Who Has OCD

Based on your test results, it’s possible that you may have OCD.  However, only a qualified mental health professional can make an actual diagnosis.

We suggest that you read the articles about OCD and its treatment on this web site. The information was produced by people who have overcome OCD along with the help of OCD experts – all of whom want you to be successful in getting a proper diagnosis and effective treatment.

With Cognitive Behavior Therapy (CBT), you should be able to gain control over OCD and regain your life and all its normal activities. If you have a different disorder, a therapist will be able to help you get better using a different treatment approach.

Follow these steps to recovery:

1. Get smart – read about OCD treatment on this web site.
2. Get help – find a cognitive behavior therapist who can diagnose and treat your condition.
3. Get better – with CBT, life DOES get better. Relief from OCD could be weeks or months away.
4. Get started – What are you waiting for?

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Based on your test results, you probably do not have OCD.  However, only a qualified mental health professional can make an actual diagnosis.  If you’re experiencing disturbing thoughts, fears or urges, you should see a mental health professional for further evaluation.

Most so-called “normal” people have some obsessive thoughts and ritualistic behaviors.  Only when a person’s obsessions and compulsions become an overwhelming focus of daily life is the person considered to have a clinical case of OCD.

Amanda’s Secret

By Her Friend

“A truly good friend should pay more attention than I did to OCD symptoms when they’re right in front of you.”

I have some great friends. And like most people, I think I know my friends pretty well. But that didn’t turn out to be the case with my friend Amanda. After you read my story, I think you’ll agree that a truly good friend should pay more attention than I did to OCD symptoms when they’re right in front of you.

Amanda and I worked at the same company for a number of years. We were both recently out of school and excited to be working at an international company with a great reputation, located in Chicago’s downtown Loop district.

We became friends. We ate lunch together, worked on business projects together, sometimes had dinner together and sometimes went on weekend shopping splurges. I went sightseeing with her parents when they came to visit from out of town, and I grieved with her when her mother unexpectedly passed away.

But I think my friendship blinded me to Amanda’s secret. There were “odd” things I just didn’t think about. Amanda was an impeccable dresser. It didn’t seem unusual to me that she was interested in the latest styles and wanted to browse the department stores and boutiques. She always suggested we meet at a store or restaurant to start our excursions, but I didn’t even think about the fact she never invited me to her Gold Coast apartment. (I saw it the week she moved in, but not again for several years.)

“There were boxes stacked in the living room nearly to the ceiling filled with sheets, lingerie, expensive stereo equipment and table radios.”

There were other “eccentricities” that I didn’t pay attention to. Amanda was always talking about getting married, but didn’t keep a boyfriend very long. I thought she just didn’t find the “right” one yet. I didn’t think she might be displaying signs of OCD “perfectionism”. When she talked of buying things for her “Hope Chest”, I envisioned my mother’s cedar chest that my mother had carefully filled with table linens, sheets and towels before she was married to my dad. That was not what Amanda meant by “Hope Chest”. I didn’t realize that when I wasn’t with her, Amanda was going on buying binges for everything. from dinnerware to appliances to electronic equipment -- and clothes.

I was thrilled when after years of dating and dropping her suitors, Amanda finally decided on a permanent boyfriend, and soon after became engaged to be married. We became focused on The Wedding. As her Maid of Honor I was charged with a number of wedding-related responsibilities, not the least of which was to help her pack up her apartment for the move to her husband-to-be’s house. I was not prepared for what I found when I walked into Amanda’s apartment.

The apartment had two bedrooms and two baths. One bath was only to be used by “visitors” - I was asked specifically (and many times) to not go into Amanda’s own bathroom. When I asked why, she said she had a “thing” about cleanliness, and needed to have her own perfect bathroom that no one else touched. As I look back now, I can only imagine her feelings of fear and anxiety when she had to use the ladies’ room at work.

There were clothing racks completely filling the second bedroom (no furniture). On the racks were hundreds each of blouses, sweaters, dresses, skirts, business suits and slacks on hangers -- many with the tags still on them. In a walk-in closet, there must have been over 100 coats -- raincoats, wool coats, fur coats, lightweight and heavy coats, ski jackets and parkas, most of which I’d never seen. In fact, I hadn’t seen most of the clothing I was then packing. I won’t even try to describe how many pairs of shoes, boots, sandals and slippers there were or all the different styles and heel heights. Again, most had never been worn.

I believe now that I was looking at a classic case of OCD hoarding. Although Amanda had registered with a department store bridal registry, she already had all her china, crystal and silverware -- in duplicate, triplicate, or more. I asked her why she would need 50+ place settings of china and she said that she might want to have a very large dinner party someday, so she wanted to be prepared. And besides, “they might discontinue the pattern of the china or crystal, and it would be hard to replace any that got broken”. It was the same for the silverware. And there were boxes stacked in the living room nearly to the ceiling filled with sheets, lingerie, expensive stereo equipment and table radios. She said she would perhaps want to put a stereo system and radio in every room of the house -- someday, when she had a house large enough to accommodate all the duplicates she had purchased.

I could go on and on, but you get the idea. I vowed to have a good long talk with Amanda some other time about all this. I didn’t want to spoil the excitement and happiness she was experiencing leading up to The Wedding.

I never did have that talk with Amanda. She died tragically in her first year of marriage from a previously undiagnosed illness (which had also claimed the life of her mother). Whether her mother’s death had been the trigger that started Amanda on her OCD journey, or whether she had just been excellent at hiding her obsessions and compulsions all along, I’ll never know. But I hope that everyone who reads this will think about some of the “excuses” our friends make for unusual behavior, and try to be a real friend by talking with them openly and frankly if the behavior might actually be symptoms of OCD. Being a true friend to someone with OCD means caring enough to help them find treatment. I will always wish I had been a better friend to Amanda in that respect.

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Love Makes It Possible: A Sibling's OCD Tale

By Jane Richman (sister)

“At times I thought the pain of untreated OCD would vanquish not only my sister, but my parents as well. Our entire family was crumbling under its suffocating weight.”

Charles Dickens’ novel, Tale of Two Cities, begins: “It was the best of times; it was the worst of times.” This statement very much captures how I feel about OCD. It is not a disease one would ever choose; I have seen my youngest sister’s life almost destroyed by the insistent anxiety, doubt and stress which OCD creates. At times I thought the pain of untreated OCD would vanquish not only my sister, but my parents as well. Our entire family was crumbling under its suffocating weight.

Yet I have also been privileged to witness the way in which my sister was ultimately able to live with OCD, work with OCD and, in the process, transform something bad into something good. My sister, Susan Richman, co-founded Beyond OCD 14 years ago in an effort to spare others the suffering which took three years of her life. Ironically, it is a disease which has given our family many gifts and enabled Susan to bequeath those gifts to others. My sister is the strongest, most resilient person I know.

It would be tempting and rewarding to write my sister’s story, but Susan has already done so on a number of occasions. My story deals with the toll that OCD takes on a family as well the affected individual. When Susan first became symptomatic, she was living and working in San Francisco, and I was the working mother of two young children in Chicago. We had moved to Chicago to enable our children to know and enjoy their grandparents, and my children, husband and I had basked in the warmth and support of extended family for five years.

When Susan became sick and returned to Chicago, it seemed as though all my parents’ emotional and physical energy focused on my sister – her illness, her treatment, and her presence in their home every weekend. My daughters felt the change acutely, questioning why their grandparents seemed so tense and why we no longer enjoyed the kind of family activities as before. Everyone’s world now revolved around Susan, and her anxiety was mirrored in all of us.

While on one hand my daughters were delighted to have their aunt geographically more proximate, they also sensed something was terribly wrong. The inappropriate medications Susan was taking caused her to gain 70 pounds, and she spent weekdays hospitalized in Chicago. None of the adults in their world could explain this to them. My husband and I were reluctant to share the details of Susan’s profound depression and obsessions for fear our children would either think her “crazy” or be so suggestible as to mimic her “phobias.” Bear in mind, this was 1983-1986 and the word “OCD” was not common in the world of psychiatric diagnoses and had never been used in reference to Susan’s condition.

A sense of loss, disorientation, and fear permeated our family. Part of the fear was related to Susan’s future: how long could anyone endure this pain and loss of functioning? And part of the fear was intensely personal: If this happened to her, could it happen to me? Even worse, could it happen to my children? I also struggled with my own sense of impotence; I was a mental health professional yet could make no sense of the treatment Susan was receiving, nor her questionable progress in the years before an accurate diagnosis was made. Yet it was difficult to intervene in any way; she had a “relationship” with her providers and they were, at the very least, keeping her alive…a perilous situation in which to inject doubts or reservations.

There was also something of “survivor’s guilt” which plagued me. Why was she afflicted, and not me? Why did I have the capacity to move ahead with developmental milestones – marriage, children, work – and she was so derailed from a promising future? She was angry at me sometimes, embittered that I could move ahead while she was stuck, resentful that I rarely found the time to visit with her during the week but only on weekends. And I was resentful as well. It seemed to take all my energy just to keep my parents going and engage in long phone conversations with Susan, much less keep my own life and family on course.

Once Susan was correctly diagnosed and began appropriate treatment (ERP), life miraculously changed for all of us – tentatively at first, but gradually the change became something we could trust. Susan became very deft at instructing all of us how to help her not “give in to the OCD.” And since many of us have “a little OCD” ourselves, she sometimes had to chide us when we gave “the wrong answer.” Humor was restored in our lives with Susan, who not only resumed her developmental trajectory – she took off, jet-propelled!

“An eminent psychiatrist once wrote, 'Love is not enough…' Yet perhaps our love supplied Susan with sustenance which, when coupled with her own determination and proper treatment, made it possible to overcome the OCD demons.”

What is amazing to me now, nearly 20 years later, is that I often forget that Susan has OCD. It comes as a surprise when on rare occasions she articulates why something would be difficult for her or how she has to strategize around a potential OCD pitfall. Clearly, it is still a part of her life, but one she can manage routinely without enlisting the help of an older sister or brother-in-law. Yet OCD also has become a part of our family. We are all acutely aware of its manifestations in friends and colleagues and other family members, and have learned to tolerate it and/or advocate for treatment when necessary. OCD has enlarged the parameters of “normal” for our family.

An eminent psychiatrist once wrote, “Love is not enough.” It was certainly not sufficient to restore my sister from the abyss of a debilitating disease when it remained misdiagnosed and mistreated. Yet perhaps our love supplied Susan with sustenance which, when coupled with her own determination and proper treatment, made it possible to overcome the OCD demons.

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DAN’S STORY (age 17)

By Janet Singer

“Despite many obstacles, Dan fought his way back from severe OCD and reclaimed his life.”

While there are many stories of people suffering from OCD for years and years before receiving a correct diagnosis, this was not the case with my son Dan. At the age of seventeen, with the help of the internet, he diagnosed himself. He had known something was wrong for at least a few years, and now he was able to put a name to it. When he mustered the courage to tell me his secret, my response was, “OCD? What are you talking about, Dan? You never even wash your hands!” Shows you how much I knew about OCD back then.

Truth be told, Dan had no obvious symptoms at the time. He had seemed a little anxious, but he was waiting to hear from colleges. Who wouldn’t be nervous? And he had a lot of trouble sleeping, but that was nothing new. There were a couple of other odd occurrences. Dan had recently stopped eating ice cream and would not go into our backyard pool. But these were isolated incidences that certainly never raised any red flags to indicate that he may be suffering from an anxiety disorder.

So back to the diagnosis. Dan’s pediatrician confirmed that he did indeed have OCD and thought it would be best if Dan connected with a therapist. He started seeing a highly recommended psychologist twice a month who kept telling us not to worry. Dan was fine. No, he wouldn’t need a therapist in college. No, there’s no special treatment he needed. Just keep coming every two weeks. That’s right, Dan is fine.

While deep down I had my doubts, it was easy to push them aside and believe every word the psychologist said, because after all, he was the expert. If the expert says Dan is fine, who am I to argue? Dan went off to attend his dream college fifteen hundred miles from home and at first it seemed like the therapist was right. Dan was fine. A few weeks before second semester ended, however, Dan took a turn for the worse. To me, it all seemed to happen so fast. In reality, though, Dan’s OCD had been festering slowly but surely throughout the year. We were just not with him to witness it.

By the time I arrived at Dan’s dorm, he had not eaten in over a week. He was spending hours at a time sitting in one particular chair, hunched over with his head in his hands, doing absolutely nothing. He could not enter most of the buildings on campus, and could only do minimal amounts of work at certain times of the day. To top it all off, he was self-injuring. My son was in the throes of severe OCD.

Despite his condition, Dan desperately wanted to complete his freshman year of college. He had worked very hard to get to where he was, and was not about to give up. And so with daily phone calls to our close friend Mark (who just happens to be an amazing clinical psychologist) I was somehow able to help Dan finish the semester successfully.

But Dan was still a very sick young man, and his summer was spent at a world-renowned residential program specializing in OCD. It was here that he stopped self-injuring. It was here that he also finally got the right treatment, Exposure Response Prevention (ERP) Therapy, and I credit this therapy for literally saving his life. But there was a tradeoff. In order for Dan to function well enough to participate in ERP Therapy, he needed medication. Within two weeks of entering the program he was taking fluoxetine (Prozac), clonazepam (Klonopin), and risperidone (Risperdal).

Dan’s progress was slow, but it was still progress, and with a strong support system in place (a psychiatrist, a therapist who specialized in OCD, and his family) he headed back to college for his sophomore year. Dan struggled but never gave up. Risperidone was replaced with aripiprozole (Abilify). Fluoxetine was replaced with venlafaxine (Effexor). At this point Dan was in rough shape and was barely able to complete his schoolwork. But he still forged ahead. While his OCD was in check, his anxiety grew and he was now depressed. I wondered if my son would ever again be able to function well in society, or even worse, survive.

At one point, Dan’s psychiatrist prescribed lisdexamfetamine (Vyvanse) for the purpose of “enhancing the effects of the other meds”. I didn’t really understand that reasoning, as I know Vyvanse is prescribed for ADD/ADHD, which Dan did not have. I questioned this decision and didn’t really get a satisfactory answer. But we trusted the doctor, and so Dan began taking Vyvanse.

The Vyvanse certainly kept Dan awake, but after a month of taking it, he became even more depressed and anxious. His doctor immediately cut Dan’s dosage in half, and three days later told Dan to stop the medication entirely. The results were disastrous. Dan could barely stay awake at all for the next four days, and he admitted to having thoughts of suicide. Not knowing where to turn and certainly not trusting his psychiatrist at this point, we brought Dan to a mental health facility near his college. He stayed there for a week and we were told they would get him “back on track” by reducing his meds. Unfortunately the opposite happened. By the time he left this facility, he was taking Klonopin, Abilify, Effexor, Adderall and Atarax.

I had had enough. This was not my son anymore. This was a walking zombie. I “interviewed” several psychiatrists on the phone, and made an appointment for Dan to see the one that felt he should probably be on fewer medications. I also made an appointment for Dan to have a complete physical.

Connecting with these two new health-care providers was the best thing we could have done. Dan’s physical and subsequent tests revealed tachycardia (fast heart rate), sky-high triglycerides, possible pericarditis, and a thirty-five pound weight gain in just a few months. His hands were also extremely shaky, as if he had Parkinson’s disease. These symptoms and conditions were all attributed to the drugs that he was taking.

Dan’s new psychiatrist began weaning him off of each medication, one by one. The results were amazing to watch. It was as if layers and layers of crud were being scraped off of Dan and glimpses of my son were emerging. His test results returned to normal. The extra weight dropped off. His anxiety and depression lifted, and in Dan’s own words his OCD was “practically non-existent.”

I thought back to when Dan returned to school after his summer at the OCD Clinic. He was taking his meds and hanging on by a thread. I remember thinking, “If he is this bad off with all of these meds, I hate to think what he would be like without them.” It never occurred to me at the time that the meds could be the problem.

Now I’m not recommending that everyone stop taking medication for OCD. I am not saying that at all. I do believe that at some point Dan probably needed many of the meds he was taking. What I am saying is that we all need to be acutely aware of the potential side-effects of some of these heavy-duty medications. Make sure you get regular physical exams, and not just the quick one your psychiatrist gives you. Trust your instincts. If something doesn’t sit right, ask questions. Get another opinion. Do your own research. Do whatever it takes to make the most informed decision you can for you or your loved one.

Of course Dan’s story is far from over. He is only twenty-one. But he has been completely off of medication for two years now, is back at school, and is living life to the fullest. Despite many obstacles, Dan fought his way back from severe OCD and reclaimed his life. He is living proof that OCD, no matter how severe, is treatable.

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Educating The Educators About OCD

By Gail S. (parent)

“Providing schools with information and tools is critical to the success and self esteem of our children.”

When my daughter was diagnosed with OCD at age 13, I knew it was critical that her teachers be aware of her condition. So, each year we had a knowledgeable individual meet with her core teachers to explain what OCD is, and specifically review how her symptoms impact her learning. Very few of the educators were familiar with OCD and every year the teachers would express their gratitude because the session allowed them to improve their ability to teach my daughter. They would make the adjustments that were necessary - extended time on tests, reducing the number of math problems for homework, or privately answering questions after class if she had been distracted during a lecture - all in an effort to help her succeed in school.

Through the sessions they learned that her distracted thoughts took up real time - during tests, when listening in class, and while doing homework. They began to understand that the accommodations provided were necessary to "level the playing field" - to provide her with the same time that the other students, who weren't struggling with OCD thoughts for hours a day, had to accomplish the same tasks. The educators learned that OCD literally robbed her of time to focus on school work. Due to these sessions, they understood her emotional and educational needs and, as a result, she did succeed. This year she is graduating from a top university, something that might not have happened without support of teachers throughout her younger years.

Now she is an advocate for herself and for others with disabilities, but a young child would not yet have developed the skills to be a self advocate. Providing schools with information and tools is critical to the success and self esteem of our children.

“We need to advocate for our children by providing school systems with information so (OCD children) can receive the support and respect that they deserve. “

One example will always stand out in my mind. At the beginning of one school year, the teachers had not yet had their information session on OCD. My daughter had a history exam and in the middle of it a classmate asked to borrow her pencil to use its eraser. Unfortunately, he happened to sneeze while holding the pencil. My daughter sat immobile, unable to touch her pencil again or complete the exam. After class, she asked the teacher for additional time. Not aware that she had OCD, or what that meant, he said that it wouldn't be fair to the other students. The next day, when the situation was explained, he gave her time to complete the test, which she did easily. Four years later, when she graduated from high school, that teacher approached me with tears in his eyes and told me that he had never forgotten that moment and how proud he was of my daughter for continuing to persevere despite her challenges.

Support only comes with knowledge. We need to advocate for our children by providing school systems with information so that they can receive the support and respect that they deserve.

I have more respect for my daughter and her willingness to pursue her dreams, despite her struggles with OCD, than I have for anyone else that I know. I believe that every child or adult who is coping with challenges deserves that respect, and providing knowledge is the key.

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“Mics”

By Nancy G. (parent)

“Overnight my 10-year-old daughter became an anxiety factory.”

We are a whimsical family. Her little ways of doing things had been dubbed, "egg yolk traditions," and they seemed nothing more than amusing. But overnight my 10-year-old daughter became an anxiety factory. Was this O.K? Was that O.K? Was it yes or no, black or white? There was no tolerance for a middle ground.

"May I confess something," was such a frequent utterance that we used the acronym, "mics," pronounced, "micks." Some days I thought I would go nuts with trips to private rooms for a "mics."

Then we had to say things the "right" way. Then shoes and socks didn't feel right. Not so amusing anymore!! What was going on? At the same time, she had developed some coughing, snorting, and blinking which we assumed were symptomatic of some form of allergy. So, we spent $400 to have her tested, but no allergies.

Providentially, as the former leader of our home education group, I received a newsletter for home educators of "special needs" children (which I always promptly threw away. Ha!). In it, the book, Teaching the Tiger, was reviewed. This is a workbook for teachers of children with OCD, Tourette Syndrome, and ADHD. Something in that review rang bells for me, and I purchased the book. When I looked over the symptom lists for OCD, TS, and ADD, I knew what we were dealing with.

One month later, my 6-year-old son was climbing up on my lap when his leg accidentally bumped the coffee table. He promptly got off my lap, went back to the table and purposely bumped his other leg. Groan! I knew. He couldn't get into the kitchen, because he couldn't get both feet to touch the threshold at the same place and for the same amount of time. Back and forth over the threshold he would go; it was horrible to watch.

“I realized that my eldest also had some of these symptoms and I recognized how much of this I had struggled with myself over the years.”

I realized that my eldest, also had some of these symptoms and I recognized how much of this I had struggled with myself over the years.

Four years later, we are all on medicine, all using behavior therapy, all familiar with living with OCD and living with others with OCD. It's not a terrible life; it's just not what I expected. But we are surviving.

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Managing OCD For Life

By Paula T. (parent)

“For several years we didn't know that Dan had OCD because he was symptomatic at school but not at home… We took him to doctors, who told us there was nothing wrong with him.”

Our son Dan had the "evening up" kind of OCD. When he used a three-toggle light switch, he had to click all three toggles at exactly the same time. He retraced letters that looked uneven when he wrote, and if he touched something with his right hand, he had to touch it with his left hand, too. Dan also had to "even up" conversation by silently repeating backwards everything he said and heard.

For several years we didn't know that Dan had OCD because he was symptomatic at school but not at home. Dan was having trouble in school. His teachers told us that he "seemed distracted" and "had trouble staying on task." We took him to doctors, who told us there was nothing wrong with him.

When Dan was 8 years old, we noticed Dan "evening up" while we were on vacation. When we got home, we took him to a neurologist, who diagnosed OCD. I read a library book about OCD and learned that Dan needed a cognitive behavior therapist who did "exposure and response prevention" (ERP) therapy. I found Dan's therapist through Beyond OCD .

Dan's ERP was hard work, but effective. His therapist taught us how to help him at home, and we read some terrific books about OCD written for parents and families. We also bought children's books about OCD for Dan. Our family attended OCD picnics, events, and conferences. We had fun, and met kids, teens, and adults with OCD, and we learned even more about the disorder.

Dan is now 13, and dealing with his OCD is one of the many things he does. He loves spending time with his friends, fencing, and playing the saxophone. He does well in school, and sometimes he needs to work on his OCD. Dan knows that OCD never really goes away, but with the training he received from his therapist, and refresher sessions as needed, he has the tools to manage his OCD for life.

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Beyond OCD Saved My Family

By Jacob’s Dad

“My wife and I like to solve our own problems, but we truly could not have achieved such remarkable results with (our son) Jacob were it not for Beyond OCD and a doctor who performed the right kind of treatment.”

Dear Beyond OCD ,

Your organization saved our family!

Many people write letters to complain, but I prefer to thank people when they do things right or provide exceptional assistance. I have never written a letter with a more grateful and appreciative heart than I do now.

When I visited your office at the end of last summer, my family was scrambling for ways to cope with the sudden bloom of OCD in my nine-year-old son, Jacob. Jacob excels in both school and sports. He especially loves football and the Chicago Bears. Without warning last August, Jacob starting putting parts of his shirt in his mouth all the time. We began to notice that he did this mostly in public, and he wouldn’t tell us why he was doing it.

One day, after a couple weeks, I noticed that his entire shirt was wet and discolored. When he refused to answer our questions, it dawned on me that he had put his shirt so far into his mouth that he gagged himself.

It turned out that Jacob had begun thinking that other people had what he termed “badness” that would contaminate him and make him either less intelligent or damage his ability in sports activities. If he walked by or got near someone else, he needed to constantly wipe his tongue on his shirt to prevent himself from swallowing the “badness”.

"When Jacob became convinced that his little sister, Julia, had “badness” as well, we knew we had a family emergency.”

When Jacob refused to go to his end-of-summer basketball and tennis programs because of the kids that were there and the “badness” they were carrying, we feared we were going to have a potentially disastrous school year.

When Jacob became convinced that his little sister, Julia, had “badness” as well, we knew we had a family emergency. Despite being four years apart and opposite genders, our younger two children are buddies and often inseparable. Suddenly, Jacob couldn’t be in the same room–or car–with Julia. It broke my heart to watch my wife try to explain to our five year old why her big brother couldn’t go near her or use anything she touched.

We were scared and desperate to find help for Jacob – and our family. My wife quickly consulted our pediatrician and some therapists, but it seemed that progress, if any, was going to come painfully slowly. When she told me that a therapist mentioned Obsessive Compulsive Disorder (OCD), I searched the Internet for local organizations. I found Beyond OCD and decided to visit your office.

We had already spent over two weeks with doctors and therapists, but it was my one hour with you that changed everything. You were so compassionate, so understanding and so knowledgeable, that I began to feel relief just talking with you about Jacob.

Thanks to you, I learned the most (and only) effective treatment for him as well as a superior therapist to help us administer it. The doctor sensed how desperate we were to help Jacob as the school year began and offered to see him on the Labor Day holiday. Suddenly, we went from not knowing how to help him to having a positive plan of action.

We learned that OCD usually takes an average of 8 years to accurately diagnose and another 9 years to find the right treatment. Our doctor was hopeful that our son would be functioning better in nine months.

Imagine our joy when Jacob completed his therapy and was back to normal in just six weeks. Six weeks! Had we continued with the recommendations of our pediatrician and a therapist referred to us by friends, our son—and our family—would still be suffering the full effects of OCD.

“Imagine our joy when Jacob completed his therapy and was back to normal in just six weeks.”

In late August, we could never have imagined that in two short months Jacob’s compulsions would be completely gone.

Jacob went from exhibiting bizarre behaviors to achieving hero status. His bravery and comprehension of the disorder, as well as his mastery of the techniques needed to defeat it, were astounding. Jacob takes exceptional pride in the fact that the doctor now uses his case as a teaching example for other children wrestling with OCD.

As Jacob continues to manage his OCD, I wanted you to know what else he has done since getting better:

• After starting therapy on Labor Day, he was out trick-or-treating in his Bears helmet on Halloween without any symptoms.
• He is not only back to playing in his basketball league, but he has already scored the game-winning baskets in two games this season–at the buzzer!
• He was able to attend a Bears game with me this season and sat among a bunch of loud, sweaty strangers (at the onset of his OCD, he had to sit far from anyone else and still licked his shirt hundreds of times).
• He can now sit next to anyone in school without suffering any effects of the OCD (Jacob’s teachers and school principal were great with him during his struggle and assisted where needed. Your organization’s materials with regard to school issues were sensational, and we shared them with the school personnel to enlighten them about OCD).
• Incredibly, less than a year later, Jacob spent eight weeks away from home at summer camp for the first time and loved it. He made friends, swam often in the lake and, somehow, won five championship trophies.

and the best one of all.....

• Jacob and Julia are back playing together all of the time. They spend hours in close contact, hug each other often and even share stuffed animals at night. My wife no longer takes for granted the joy of having all of our kids together in the same car.

Because of Beyond OCD , our family has returned to functioning as it did before last summer.

My wife and I like to solve our own problems, but we truly could not have achieved such remarkable results with Jacob were it not for Beyond OCD and a doctor who performed the right kind of treatment.

It is with much gratitude and emotion that our family offers our thanks to you. The enclosed donation is uncharacteristically large for us but is only a small token of our thankfulness. We hope it will further enable your organization to continue being a beacon of hope for people—and children—suffering with OCD.

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Lucky For Me, My Mom Has OCD

By Ben M. (age 13)

“I was very worried that something would happen to my parents … and that I would never be able to see them again.”

When my OCD was first sparked it was the summer after fourth grade. I was at summer camp, and it was my first time away from my parents for more than one or two nights. The first night I spent at camp went very well, but the second night was probably one of the worst times of my life. I was very worried that something would happen to my parents back in Chicago and that I would never be able to see them again.

One of the worst things about it was that I had no idea what was going on. I was thinking things like: what if someone breaks into my house with a gun and shoots both of my parents, and I would never get to see them again. One of the weirdest things for me was that I was only afraid during the night. I wrote letters home to my mom begging her to come and take me away from camp and bring me back to Chicago. She called the camp office and asked to speak to me. Unfortunately, since I was only afraid at night and was active and happy during the day, the camp directors had no idea I was having such a terrible time. They interpreted the night time fear as homesickness and encouraged my parents not to talk to me on the phone because in their experience it made the homesickness worse. So I never talked to my mom. But lucky for me, my mom has OCD – that’s how I figured out what it was. Somehow I managed the next four weeks at camp because there was nothing else I could do. I cried most nights and was always very scared, but there was nothing I could do about it, so I toughed out the last four weeks.

If my OCD had sparked now, I would know what was happening right away and would realize that the best thing for me is to keep thinking about my fears. But back then I had no idea what to do. I tried to stop thinking about my parents and because of that, my fears never got better.

When I finally got home from camp, I talked to my mom and she signed me up for therapy. After a matter of weeks of exposure therapy, my OCD was almost nothing. Now when my OCD comes back after I watch a scary movie or TV show, I know what to do and my mom can help me. It is not always easy when my OCD comes back. When it is hard, I know that I need to do some exposure and that the more scared I am and the more exposure I do, the less my OCD will bother me later.

To kids with OCD, just remember that the more exposure you do now, the less your OCD will bother you later.

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Hey, It's A Genetic Thing

By J. Z. (age 17)

“Dealing with Tourette’s Syndrome and OCD has made me a stronger, better, and more empathetic person. I don’t use my disorders as a crutch, and I don’t let them get in the way of what I want to do.”

I’m living proof that OCD and Tourette Syndrome are linked and run in families. I had the genes coming at me from my mom’s side and from my dad’s side, and I ended up with both disorders. My tics started in first grade. I had a high-pitched vocal tic, followed by facial tics: blinking, grimacing, grinding teeth.

Tics come and go, and I had quite a parade: sniffing tics, grunting tics, slurping, whistling, humming, tics in my hands, legs, and neck, and even a shrugging tic that gave me whiplash. I had a tic to tighten my abs that made it hard to digest food. I even ticced in my sleep. I also had “Tourette storms” – uncontrollable rages – but fortunately I was pretty little at the time, and usually within yoinking distance of one parent or the other.

My teachers blamed my parents, and my parents probably blamed themselves. My aunt, who’s a teacher, thought it might be TS, but the counselor my parents were taking me to at the time said, “Oh, no, this isn’t what Tourette looks like.” Sorry: this is exactly what Tourette looks like. Some people think TS is only coprolalia, the swearing tic, which I didn’t have. It wasn’t until the fourth grade that a smart neurologist diagnosed my TS. My parents breathed a sigh of relief and started reading all the books about Tourette they could get their hands on.

In sixth grade, the mental anguish of OCD joined the physical torment of Tourette. I had scrupulosity (fear of hell, compulsive praying) and contamination obsessions. I couldn’t sleep because my mind swirled with dread of hanta virus and eternal damnation. I couldn’t eat for fear that chemical residue from science class might be on my hands. The grades took a nose dive.

My brother was already getting ERP (exposure and response prevention) therapy for his OCD. When I told my mom what was happening, she booked my appointments right after his. I remember her packing up for our ERP appointments: a three-toggle light switch she had screwed together out of Home Depot stuff for my brother (he had evening-up OCD), and cookies and chemicals for me.

ERP works. I learned how to manage the OCD and get on with my life. The grandparents may not always understand the ERP lifestyle (like when my sandwich fell on the floor and my mom said, “I’ll give you five bucks if you eat it!”), but they get used to it.

Dealing with TS and OCD has made me a stronger, better, and more empathetic person. I don’t use my disorders as a crutch, and I don’t let them get in the way of what I want to do. I got the grades back up, learned to play ragtime piano, did a stint as a Kidnews “Scoop Trooper” for the Chicago Tribune, taught myself stage magic and balloon sculpting, started working out, and next year I’ll be going to college.

If you have TS/OCD, get out there and learn about your disorders and make sure your family and teachers understand what you have. Then think about all the good genes you got in the mix, and make the best of them.

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Even Steven

By David G. (age 10)

“There is a loose tile on our kitchen floor which I always need to straighten. I used to be afraid that a volcano would come if I didn't straighten it.”

What OCD is like for me: My sneakers drove me crazy, because I couldn't move my toes, and if they were in a position I didn't like, I would have to take my sneakers off. Also, they had Velcro on them, and I felt that the Velcro had to be exactly even. If it was warm out I wore sandals; otherwise I wore my boots.

I felt that my clothes had to be even and straight—I still have that—and tags are very annoying, even when they're cut off.

I have magnet sets with bars and balls, and Legos and K'nex. When I build something, it has to be color-coded. For example, if I can't find two wings of the same color, I won't build it.

There is a loose tile on our kitchen floor which I always need to straighten. I used to be afraid that a volcano would come if I didn't straighten it.

I had to avoid thresholds because I felt that each foot had to touch it for the same amount of time in the same place, and if it didn't, I had to start over.

I have to scratch things evenly, for example, both ears, even if the other side doesn't itch. When someone else does something to do with my OCD, it drives me crazy, because I can't say, "please scratch your other side." It helps to not look at them.

My work with M. (a behavior therapist) helped me to get over the problem with my sneakers. She had me just do things that bothered me when I was with her, and eventually I got used to it. (From Mom: No more threshold problems either. Whew!)

My advice to you if you have OCD is to picture something that reminds you of OCD and pretend that you are using an arsenal of weapons to destroy it. Or if you love video games like I do, pretend OCD is a boss that you have to destroy.

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Defeating The OCD Monster

By Johnny F. (age 9)

“I learned those frightening threats were nothing but a lie…when the OCD bosses you, start bossing it back!”

There once was a monster that lived inside of me I’d one day come to know this monster as OCD

It would command me to tap or it would come get me at night I tapped every doorway to avoid such a fright

To prove you love God, pray over and over in your head Before OCD came along I just prayed before bed

This monster demanded I hold my spoon steady I could not take a bite until OCD was ready

Sleep on your stomach or be a girl when you wake Now, this was a chance I was not willing to take

I thought I was alone. I thought it would go away It was tiring to obey these strange orders night and day.

Then I got caught; my mom took me aside—Why do you tap? I was brave I did not lie.

Don’t worry my son; what you have is OCD We will take you to the doctor and soon you will be free.

The doctor asked a lot of questions I answered every one He said we’ll start with medicine but your healing is not yet done.

I was sent to a therapist; told her my story too She said to control this you have some work to do.

The medicine will help, now here’s your second attack When the OCD bosses you, start bossing it back!

Although it sounded scary, I gave it a try Soon I learned those frightening threats were nothing but a lie.

Now I’m on my own happy, strong, and free And if OCD dares to come back, I will fight and it will flee!

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My Journey Through Hell and Back - A story of my battle with OCD

By Jason McClary

"If you have OCD remember that it is nothing to be ashamed of. This disease doesn’t reflect who you are; it is just a disease. Don’t be afraid to get help."

It all started one brisk fall day in September of 1989. I was 12 years old. It was the end of class and I couldn’t get my locker to open up. All of the other students had gone on to their other classes and I was left alone trying to get my locker to open. I went to my teacher and asked him if he could help me. He said “No problem.” He came over and jokingly said “Let’s make sure no one is looking”, and opened the locker. I thanked him and went on to my next class. As I left the classroom I had this horrible feeling that I had just been “molested.” This wasn’t possible. I just needed my locker opened up. I tried to shake the feeling off, but couldn’t. I went home and played the scene over and over again in my head. I was almost certain that nothing had happened, but couldn’t be 100% sure. This was the beginning of my journey into the hell known as OCD.

Almost overnight I was horrified that I had AIDS and was spreading it everywhere I went. I knew I was contaminated. I started calling the national AIDS hotline numerous times a day telling them that I thought I had given someone AIDS because I sat on a toilet seat and then they did. I would tell them that I might have gotten some saliva on someone inadvertently and thought I had given them AIDS. They would reassure me that people couldn’t get AIDS from toilet seats or saliva. I would feel better for a while and then I would get anxious again and start calling the hotline looking for reassurance. I didn’t know that I was enabling OCD because I didn’t know I had OCD.

I started to wash my hands until they bled. I didn’t want anyone to get sick because of me. I refused to use my towels more than once. I tried my best not to touch people. If I was going to be around people, I would make sure to wash my hands to get rid of my contamination. The germ phobia lasted until I was about 13. Then the disease morphed.

I was helping my dad mow the lawn. It was a nice summer day and I was feeling pretty good. I was taking the lawn bag from the mower to empty it when my world went empty. The feeling I had was almost indescribable. I felt like my soul was lost and I didn’t have a way to get it back. The thing that made me have this feeling was I questioned the existence of God. I had grown up always believing in God and that was all there was to it. Now I was questioning if God existed. I went and asked my dad how I knew if there was a God or not and he told me that was a decision that every person had to make for themselves.

Now I had a whole new thing to worry about. I started to read my bible obsessively. If I didn’t read my bible a certain way then I would send someone I knew to hell or something bad would happen to them. I would spend hours reading my bible at night. I started to have to read the sentences a certain number of times or something bad would happen to someone I loved. I didn’t understand what was wrong with me. I thought I was losing my mind. I couldn’t tell anyone about these rituals I was performing because they would think I was crazy and lock me up.

Suddenly when I read my bible, I had to put it on my nightstand table at just the right angle. If it was not at the right angle I would not be able to go to bed. I tried to fight this by lying in bed and trying to go to sleep without thinking about moving the bible, but the anxiety would be too much. I really thought I was going crazy. I didn’t know what was wrong with me. I thought I might be better off not being in this world. Somehow I made it through and continued to function.

On top of everything else, I thought I was secretly trying to poison people whenever I would eat with them. One of the worst times of my life was when I was staying over at my great grandmother’s house. It was a Saturday and we were making fried chicken. It was my favorite thing that she cooked. The smells the came out of the kitchen when she cooked were incredible. She asked me if I would like to help her and I jumped at the chance. I loved spending time with her and loved helping her cook. She gave me the chicken and flour and I shook the chicken in the bag. Out of the blue, I had this terrible feeling that I had just poisoned the food because I had touched it a certain way. I tried my best to keep it together, but came up with an excuse and went into the living room. I stood there shaking and in a panic. How could I be having these thoughts? Was I turning into a monster? I looked in the mirror and looked myself in the eyes and said “You are not trying to poison anyone!!!” I managed to pull myself together and continued to help with dinner. As we were sitting at dinner, my great grandmother and great uncle and I talked about how my life was. I told them everything was great and I was looking forward to going into high school. The whole time I was thinking that this was going to be the last meal I had with them because I had poisoned them. As we went to bed that night, I knew they would be dead in the morning. When I awoke to the smell of bacon, I was really relieved. While I felt good, it wouldn’t last for long.

One morning when I was 16, I awoke to a horrible thought. What if I sexually abused a child? Where did this thought come from? It seemed like it appeared out of nowhere. I had never even thought about this before. I was now convinced I was a monster. I didn’t know how I could go on with my life.

I was in high school at this time and needed to keep it together. I couldn’t let anyone know about the thoughts that I was having. I hated having these thoughts. I didn’t know where they were coming from. I was sure that I was some sort of deviant that needed to be put away for the safety of others. Normal people did not have the thoughts that I was having. I somehow managed to keep it together and act as if everything in my life was normal. One day I decided I needed to tell someone about the thoughts I was having so I thought I would tell my girlfriend. That didn’t go over too well. She told me to just stop thinking those thoughts, so I tried. It didn’t work.

When I went to college things seemed to calm down for me. The thoughts were there, but not as often. I finally thought I was free of all these terrible thoughts once and for all. Things were going great. I was getting good grades, being social and enjoying life. Then, my girlfriend broke up with me. I had a panic attack and the thoughts started coming back. I moved to Florida for a couple of years and then moved back to Colorado to start over.

Things went well in Colorado. I finished college, got married and had a good job. One day I was in the book store looking at books trying to figure out what was wrong with me when I found a book on OCD. I started reading it and it sounded just like me. I finally had a name for this disease and it was OCD.

I found a doctor who put me on an SSRI and things started to get better. I thought medication would be the answer. Things were going great. I thought I had finally beaten the disease and all would be well.

My wife got transferred to Chicago. I was pretty excited to move to Chicago. I was doing fine there until one day I was in a Target and was in the bathroom when my worst fears came true. I was stuck in a bathroom with a child, and I was alone. I immediately froze and made my way out of the bathroom. I made it out of the bathroom but was in a complete panic. My head was spinning and my hands we clammy. I immediately thought that I had tried to check him out at the urinal. I couldn’t get that thought out of my head. I played the scene over and over again and couldn’t be sure that I didn’t try and check him out at the urinal. I didn’t know what else to do so I got drunk and blacked out. The next day I called a doctor again.

I went to a therapist who didn’t specialize in OCD, but did help me with some of my anxiety. I was starting to do really well. I was reading about OCD and getting better. I was on a different medication and was in good shape. Then we moved to Nashville.

I wasn’t looking forward to another move, but it was the right thing to do. I quit my job and we moved to Nashville. I did okay for a while, but I had too much time to sit and think. My thoughts started creeping back in and pretty soon they took over my life. I was at the lowest point of my life. I was ready to give up and then I found a therapist who specialized in OCD.

My therapist saved my life. When I told her about the thoughts I was having, she said that she could help me. I have never had anyone tell me this before. She said it would be a lot of hard work, but I could get better. I have been seeing her for over a year and my life is completely different than it used to be. I have learned through cognitive behavior therapy (CBT) that I suffer from a chemical imbalance. My brain sends out faulty signals. I have learned how to resist doing rituals and compulsions. I have learned that OCD is not who I am. OCD is something that I have.

I still have thoughts and when I am stressed out my symptoms worsen, but I now have the tools necessary to wage war against OCD. I won’t lie, sometimes it gets the best of me, but for the first time in my life I am having more good days than bad days.

If you have OCD remember that it is nothing to be ashamed of. This disease doesn’t reflect who you are; it is just a disease. Don’t be afraid to get help. Therapy is nothing to be ashamed of. It is not easy and is a lot of hard work, but if you stick with it you can get better.

Keep up the fight!!

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My Battle with Obsessive Compulsive Disorder

by Lizzy S.

I hope my story gives others hope as you can live a completely happy and fulfilling life even with OCD.

My battle with Obsessive Compulsive Disorder started out like so many others. The earliest symptoms I can remember appeared around age 8. I had started to develop a prayer routine at night which, in my OCD mind, I believed would keep my loved ones safe. I felt I had to say my family member's names 8 times, touch the right side of the wall after, blink 8 times after that and the list goes on. With so many rules and restrictions, I could not complete the prayer “perfectly” no matter how hard I tried. I vividly remember it was late at night and my mom was still up cleaning. I ran down to her and burst into tears because I could not get my prayers right and was so worried that my loved ones would be hurt because of this. This was the early 90's and my parents had no knowledge of OCD. My mom brushed this off as a silly childhood quirk and was not at all alarmed that something more serious might be happening.

Obsessions and compulsions continued on and off throughout my childhood and changed themes but usually fixated on my health and a fear of dying from AIDS, cancer, leukemia, appendicitis, a brain tumor, etc. My OCD was more just background noise while I was young but became stronger when I was getting ready to leave for college. For me, it seems that anytime I have a major transition in my life which involves a large change my OCD comes on full force. I have had two major episodes; one being going to college and the other being a relocation my husband and I made out of state for his job.

With my first episode, I had heard bits and pieces here and there about OCD and figured I had it but so badly wanted to believe I did not. I compulsively asked my parents over and over whether I had OCD and if I was going crazy. Since I functioned fine and was a successful high school student, they assured my that everything was fine with me and that I did not have OCD. I even insisted on an appointment with my then pediatrician who was uneducated on OCD and as well assured me that I was fine. Once I got to college the stress leveled out and I was doing very well again.

My second and by far most destructive episode came seven years later. At this point, I had completely forgotten about OCD and thought it was just some quirk and phase I went through when I was younger. A lot of stress happened to me in the span of a year; a breakup and makeup with my now husband, my grandma passed away, I got engaged, was looking at a possible relocation and trying to figure out a career. At some point this all came to a head and my long, lost friend OCD came back with a vengeance.

Like all sufferers, this was a horrible time of anxiety for me that lasted a while. I lost a ton of weight, had a very hard time sleeping, could not concentrate on work, and was constantly seeking reassurance and barely functioning. My saving grace throughout all of this was finding Beyond OCD and coming into contact with its founder, Susan Richman. I was able to get in therapy and eventually on medication. My husband and I wound up relocating to Florida where I am continuing treatment and am doing much, much better!

My testimonial for Beyond OCD is a long time coming because I thought that in order to share my story I had to have complete victory over OCD. The biggest lesson I have learned over the last year, and that Susan really helped me to accept, is that OCD is a disorder that I need to accept as part of my life for the long haul and continue to manage. For the periods of time when I am feeling well, and stress is low, I do just fine. When stress is higher I have my struggles but have learned to manage much better. I recently came off medication as my husband and I would like to start a family soon and have just begun therapy again so that I can stay on top of my OCD. I hope my story gives others hope as you can live a completely happy and fulfilling life even with OCD. I am living proof.

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I Embrace You OCD

By Jill Armstrong

"As soon as I embraced OCD I took back the power it took from me so long ago."

If someone were to tell me seven years ago that I would have the life that I have now, I would have called them crazier than me! I’ve had OCD since I was about five or six years old, but wasn’t diagnosed until I was almost 27. It was then that I had a breaking point that led me to recovery.

During that span of 22 years, so much of my childhood and younger adult years were taken from me by OCD. My OCD has ranged from mostly physical compulsions early on (repeating actions, checking, saying things over and over again, and more) to mostly mental obsessions and compulsions (ranging from perfectionism, moral scrupulosity, harm fear, and more). Let’s just say I’ve had my share plus some! I rarely let anyone see my anguish and hid my rituals to protect myself from the scrutiny and misunderstanding from others. I had developed an unbelievable amount of shame over the years, combined with low self-esteem. If I couldn’t stand up to a voice in my head, how could I stand up to others? I managed to push my way through life staggering between my okay times and lows but, as I got older, the lows started to increase and with more severity.

One day I was driving down the road in my car with tears streaming down my face. I sat there thinking how great it would be to be hit and killed by another driver to silence my pain. It was then that I knew to either get help or…well…I didn’t know. I was reminded about the notion of OCD by someone and got a couple books from the library. I sat on my porch one morning and began to read the first page and I cried with joy. I wasn’t crazy after all! Someone knew what I was going through and it was real and not just in my head! I was understood and accepted for the first time in my life by someone I had never met, but I felt they knew me better than anyone else ever had.

I sought an online support group for OCD, was referred to an OCD specialist, and started to recover. I still had ups and downs while many other things happened in my life not related to my OCD, but I feel because I had started the recovery process, I was finally able to get a handle on life.

It’s taken me a while and I’ve had to go through many more extreme highs and lows, even after diagnosis and treatment, to get me to the point of where I’m at today. I attribute my latest success against my battle with OCD to acknowledging and embracing it’s presence. Before when I would receive treatment and start to improve, I just wanted to pretend I didn’t have OCD, and would drop out of therapy. It’s the classic image of putting your fingers in your ears saying “I can’t hear you! LaLaLaLaLaLa!” Who could blame me though? I HATED OCD and what it had taken from my life. I can never get those years back. But being in denial only led me to a darker place when one of the lows would hit, I was blindsided and debilitated. I eventually became so tired and saw that what I was doing wasn’t working so it was time to try something new.

I stood up and said “OCD, I know you will be with me throughout the rest of my life and you know what…that’s okay. You are a part of me, but you are not me. I am who I am today in great part because of you and with the great qualities you gave me, including compassion for others who suffer. I say thank you but it’s time I say goodbye to our dysfunctional relationship. I know we will still be acquaintances and I’m content with that now.”

I started to attend OCD support groups, reached out to other sufferers, dove straight into my schoolwork on becoming a counselor to help other OCD sufferers, and I couldn’t be happier. With each day I grow stronger because I am facing my OCD every day. No more hiding, no more cowering in fear. I did that for way too long. As soon as I embraced OCD I took back the power it took from me long ago. I’m okay with OCD now because I’m in charge, and it’s something I thought I could never do.

So here I stand to tell as many other sufferers as I can reach out to, that you can take back control of your life too. I’m not going to lie and say it’s easy because it’s not. In fact it’s damn right hard, but so is living with OCD. When you finally accept that it’ll always be with you there is nothing left to fear, and then recovery can begin.

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Out of the Darkness

By Susan Richman

It seems like my life changed into a nightmare overnight. One day I was happily practicing law in a high-powered, San Francisco law firm and engaged to be married. Germs were the farthest thing from my mind. The next thing I knew, I could barely leave my apartment to go out for groceries.

It all started with a dead mouse in my apartment. The fact that it died made me start thinking about contamination. It must have had some sort of disease. It must have spread that disease all over my apartment floor. Suddenly I found myself cleaning my floors with isopropyl alcohol and Lysol. But it didn’t stop there.

My mind kept creating ever-wider circles of contamination. What if the mouse wasn’t just on the floor, but had also run across the table? Then all the papers on the table were contaminated. I had to clean what I could, or keep track of the things that were contaminated that I couldn’t clean. Because if something was “contaminated,” and I touched it, then anything else I touched became contaminated.

Soon my thoughts about germs spread beyond the mouse. On the street, I became afraid of germs from garbage cans or trucks being blown on me by the wind. If someone coughed as they walked past me, I imagined germs “coming at me.” Then my clothes were contaminated, and everything I touched became contaminated. Getting to work became an ordeal of Olympic proportions because walking a block could take a half hour. I worried about spots on the sidewalk that might be “blood,” circling around them, trying to look normal in case someone who knew me walked by. By the time I got to work, I was drenched with sweat.

Once at work, I could do my tasks, but there was a soundtrack going beneath the surface that was keeping track of all the contamination. Yet I was getting rave reviews at work. I was truly living two lives.

Back home after work, I always did a total “decontamination” ritual that took several hours and included “containing” my contaminated clothes, using isopropyl alcohol on my body in the shower, and re-cleaning the shower. If I made a mistake and touched something and then later decided it had been contaminated but I’d already touched other things, I might have to start all over. I’d fall into bed at 2:00 or 3:00 in the morning and get up at 6:00 to go to work and do it all over again the next day.

I knew something was wrong from the start. I sought professional help immediately, from some of the best psychiatrists in the country. We talked. I tried the medications of the day (this was before SSRIs came on the scene). I worsened. Soon I could barely leave my home. My family had to bring me back to Chicago and take care of me.

I remained like this for three years—trying different medications, talking to different doctors, worsening with each day.

Finally, one day my sister was at a brunch in Washington, D.C. at which she happened to hear about Edna Foa’s OCD program in Philadelphia. I immediately went there for three weeks of exposure and response prevention (ERP) therapy. They were tough weeks, but they gave me my life back. When my mother met me at the airport on my return to Chicago, I proudly showed off my desensitization to germs by licking the airport window! She cried, “You’re cured!” Of course, I wasn’t cured because at this point there is no cure for OCD. But I was normal again.

Three years of struggle—then my OCD symptoms disappeared in three weeks because I finally got the right treatment!

I’ve stayed healthy for the past 18 years with a combination of maintenance ERP therapy, medication, exercise to control stress, and the wonderful friends I’ve met through Beyond OCD .

Susan Richman is a co-founder of Beyond OCD and Honorary Chair.

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A New Way To Live

By Jody R.

“In high school, my hands were cracked and bleeding from washing them so often. I thought I was crazy, or that I was being punished for something I did. ”

Eighth grade graduation was the first time I remember washing excessively. In high school, my hands were cracked and bleeding from washing them so often. I thought I was crazy, or that I was being punished for something I did. My parents took me to a therapist but it didn't help. So I learned to hide my OCD, although looking back, I'm sure it was more visible than I realized.

As an adult, my OCD continued and was a constant source of anxiety. I was in therapy for many years, but it didn't alleviate my OCD. When my depression was diagnosed and I began taking medication, it did not alleviate my OCD either. In 1989, when I was 35, my therapist told me about an OCD treatment program at the Chicago Medical School. I went for an evaluation, and agreed to a three-week outpatient program.

For two hours, four days a week, I worked with two therapists on exposure and response prevention. The first "assignment" was to think of my greatest fear (with respect to OCD) which for me was to go to the bathroom and not be able to wash my hands. And that's exactly what we did. I was crying and shaking, but I got through it and was able to get in my car that night and drive home. I felt it was nothing short of a miracle. Going through the program was undoubtedly the hardest thing I've ever done, and at times I felt that I couldn't go back another day. But the thought of continuing to live with OCD helped me get through it. I could never have done it alone, and will always be grateful to the wonderful people at the Chicago Medical School.

My symptoms have been almost nonexistent for 15 years. Whenever I'm tempted to wash when I know I shouldn't, I'm afraid that if I do it once, the compulsions will escalate and get out of control. I don't ever want to live that way again. I worked hard to get to this point. That's what gives me the strength to stop myself from giving in and letting OCD take control.

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When Rituals Are Never Enough

By Nathan Wiegratz

“If you're committed to improving your life, seek treatment today! Don’t wallow in self-pity or feel sorry for yourself. I’ve done enough of that for everybody.”

I’ve battled the roller coaster known as OCD since I was nine, and I’m now 24. Uncomfortable with my hand washing rituals, I hid my behavior as much as I could from parents, friends, and teachers. Hand washing gradually turned into excessive perfectionism, religiousness, and politeness as I went from middle into high school. My social life was non-existent, and I was consumed by being and living as the ‘perfect’ person. I strongly felt and believed this is what God wanted me to do.

I was so good at hiding my rituals that everything appeared great on the outside. Then my world came crashing down. I was diagnosed with severe depression at the beginning of my senior year of high school.

Numerous medications and ECT (shock therapy) did nothing to help. Months later I found a doctor who realized OCD, not depression, was my primary problem. He put me on Anafranil the following summer and my depression lifted. Yet, OCD was still as strong as ever. Sure, medication helped, but only somewhat. My parents did some research and found out about cognitive-behavioral therapy (CBT) for OCD. I was told it was the best treatment available, but not easy. I gave it a try and immediately wanted to quit and instead search for a magic cure for my problems, but I was persuaded to stick with it.

Then I started to notice improvement, little by little. Soon, I realized what a social life and the meaning of fun were. I went back to college and decided to try psychology, which sure beat chemistry. Two years later I was hired for a new job. It wasn’t just any job, but one as a counselor at the hospital I had hated so much, the place where I wanted to quit my treatment for OCD. Three years later, I’m still there and now thinking about going on to graduate school. If you're committed to improving your life, seek treatment today! Don’t wallow in self-pity or feel sorry for yourself. I’ve done enough of that for everybody.

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What Other Symptoms Might Be OCD?

OCD doesn’t have to rule your life.  If you’re struggling with symptoms like the ones you've read about on this web site, ask your parents to help you get treatment for OCD.  It won’t go away by itself.

OCD symptoms can be as varied as the people who have them.  But there are some “warning signs” that can indicate OCD or another disorder.  Remember, OCD and other disorders ARE treatable.  Noticing what’s wrong is a step in the right direction toward getting better.

Could any of these situations describe your situation?

• You take so much time getting dressed in the morning that you’re constantly late for school.  Or between classes, you have to perform certain actions (like checking the lock on your locker) or mental rituals (such as praying, counting, saying certain phrases) over and over again, so you’re late for the next class.  Maybe you have to open and close your locker a certain number of times, or count your steps while you walk down a hallway.  Or when you’re leaving a room, you have to keep going in and out of it until it finally feels OK to leave it.  This could also happen when you’re going up and down stairs – you have to go up and down the stairs so many times in order to feel “right,” that you’re exhausted and late for your ride, the bus, your next class, meals, etc.
• You have a lot of trouble paying attention in class or concentrating on homework assignments because you’re constantly thinking about your fears or “bad” thoughts, and trying not to perform the actions that would temporarily make you feel better.  No matter how hard you try to get rid of the thoughts, they just won’t go away.  And you’d be embarrassed if anyone saw you perform your compulsive  actions in class or in public.
• You’re not able to complete in-class assignments or homework assignments because they’re “not done well enough” or aren’t “right,” and you always seem to run out of time.
• Your compulsive actions take up so much time at night that, not only is your homework not done, you’re also up so late that you’re not getting enough sleep.  And you’re so tired the next day you can barely make it through your classes.
• You used to get good grades, but now your grades have really slipped (and you realize it’s because the obsessions and compulsions are getting in the way of studying, participating in class or completing homework assignments).
• Your uncontrollable fears, worries and unwanted thoughts are severely straining a relationship – at home, with friends, or at school.
• You’re afraid you might seriously hurt someone because you can’t stop thinking about hurting them, or you keep having violent or bizarre thoughts about harming others.
• You believe your thoughts can actually cause things to happen or not happen.

If any of this sounds like you (or someone you know), speak up.  As hard as it might be to ask for help or to talk about obsessions and compulsions with your parents or someone at school, living with OCD is much harder.  The sooner you start getting treatment, the sooner you can start being more like the YOU you used to be.

OCD Spectrum Symptoms

There are a number of other disorders with some unusual symptoms that may be having a negative impact on your life.  Sometimes these disorders, which share certain similarities with OCD, occur along with OCD.  Some of the symptoms of these disorders, which have been called OCD spectrum disorders, include:

• You secretly pull out hair, bite your nails, or pick at your skin.  At first, you didn’t worry too much about it, but now you’re starting to see some “bare” spots in your hair, or your nails are so bitten that they bleed.  Maybe the spots where you’ve picked at your skin are starting to develop sores or scabs, but you continue to pick at them.  Now you’re afraid people will notice, but you can’t stop.  It’s very important to ask for help before these disorders get worse.

Other Related Symptoms

• Sometimes there are related disorders that are not OCD but may occur along with OCD.  These include depression, attention-deficit disorders, tic disorders (body, facial or vocal twitches or sounds), bipolar disorder, panic disorders (“panic attacks”), or feeling alienated from everyone else.
• It may seem you’ve always been concerned about your weight, but now you’re “obsessed” with it, constantly reviewing your appearance.  Maybe you’re not eating very much, or making yourself vomit after a meal to keep from gaining weight.  These symptoms aren’t just different; they can be dangerous to your health. 

While it may be hard to tell your parents or a teacher you trust that you’re experiencing symptoms that are just “not YOU,” you can get better a lot faster if you don’t keep hiding the symptoms.  You need to be evaluated by a doctor so you can get the right treatment for the right problem.  You owe it to yourself to get better, and get back to enjoying life!

 

More about treatment for OCD

Back to Just For Teens

What Is Cognitive Behavior Therapy (CBT)?

Cognitive Behavior Therapy is a treatment for OCD that uses two scientifically-based techniques for changing a person’s behavior and thoughts: Exposure and Response Prevention therapy (ERP) and Cognitive Therapy.  CBT is conducted by a cognitive behavior therapist who has special training in treating OCD.

In ERP therapy, people who have OCD are placed in situations where they are exposed to their obsessions and gradually prevented from performing the compulsions that usually ease their anxiety and distress.

The first step in ERP is for you to describe to your therapist all of your obsessions and compulsions.  You have to be honest and tell him or her everything.  Otherwise, he or she won’t be able to help you as much.  Once you’ve described all your obsessions and compulsions, you and the therapist will arrange them in a list, ordering them from things that don’t bother you much at all to things that are the most frightening for you.  Then, the therapist would ask you to complete a task that involves one of the things on your list.  But don’t worry; the therapist will start with something low on your list – something he or she thinks you can handle.

Let’s say you have an obsessive fear of germs in public places, and that fear is pretty low on your list in terms of how much it scares you.  Your therapist will design a task for you that exposes you – or makes you face – that fear.  The task might be encouraging you to touch a public doorknob that you believe is dirty.  Here’s where the “response prevention” part comes in.  If your usual response would be to wash your hands immediately after touching the doorknob, the therapist would ask you to wait a period of time before you wash your hands.  As you repeat this exposure task (touching a public doorknob), the therapist would probably ask you to wait longer and longer periods of time before you wash your hands.  Over time, this gradual exposure and delayed response would help you learn to control your fear of germs in public places without washing your hands.  

It may seem weird, but this new way of confronting your fears head-on would actually lead to fewer and less intense fears or obsessions about germs.  Your brain basically learns that nothing bad happens when you stop performing compulsive rituals. 

You’d probably feel very upset when you first touched the doorknob – maybe even feel a little panicked.  But the good news is that the body has a wonderful capacity for something called “habituation” – anxiety will eventually go down without doing anything but letting time pass.  It’s something like jumping into a pool of cold water.  When you first jump in, the water may be so cold that you shiver.  But after a while, your body gets used to the cold temperature – it habituates – and you feel fine.

When your therapist helps you with ”exposures” like this (or other, more difficult kinds of situations involving your fears) over a period of time, your anxiety shrinks until it is barely noticeable or even fades entirely.  The therapist is then able to help you gain confidence and learn special skills to control the compulsions through the second form of therapy, Cognitive Therapy.

Cognitive Therapy (as applied to treating OCD) helps you understand that the brain is sending “error” messages.  Your therapist will help you learn to recognize these errors and respond to them in new ways to help you control your obsessions and resulting compulsions.  Cognitive Therapy is an effective treatment for many problems, and focuses on the meaning we attach to certain experiences that we misinterpret.  For example, if a friend passes you by without saying anything to you, you might interpret her action incorrectly and think “Mary doesn’t like me any more because she walked by without saying hello.”  And you might believe your thought is very important or meaningful.  Cognitive therapy helps us stand back from these thoughts, look at the evidence closely, and tell ourelves something more realistic or accurate.  For example, we might be taught to tell ourselves “Something is on Mary’s mind, but I don’t know what it is.”

Cognitive Therapy for OCD focuses on the experience of negative thoughts.  While most people easily dismiss such thoughts (e.g., “That’s a silly thing to think”), some people have certain beliefs that thoughts are always important.  So instead of being able to just forget about these negative thoughts, their beliefs cause them to react differently and might make them think “I’m a bad person for having such a thought!” Research shows that believing that negative thoughts are important and attempting not to have “bad” thoughts actually produces the opposite effect!

Cognitive Behavior Therapy may seem unusual.  You may even doubt that it could possibly work. After all, you’ve probably already tried to resist your compulsions without much success.  But with the right therapist and enough time and support, CBT has helped many thousands of people (children, teens and adults) control their OCD.

Most CBT treatment is conducted at a therapist’s office (or other location) once a week with exercises to practice at home between sessions.  If the OCD is very severe, more frequent sessions might be needed.

Not all mental health professionals are trained in ERP therapy, so it’s important to find one who is.  Beyond OCD can help you and your parents find a treatment provider.

 

Read personal stories of CBT success

Find a treatment provider

Back to Just For Teens section

What’s A Normal Worry and What’s Not?

Everyone has worries and doubts – it’s part of being human. But OCD takes worries and doubts to the extreme.

Everybody worries at times.  It’s normal to worry about things like school, how you look, what you said or did in a certain situation, how your parents will react to something you did or what the future will bring.  That’s part of being a human being – especially, a teen.  But OCD takes worries and doubts to the extreme.  Let’s get down to what may be really bothering you.

Maybe you’ve had an unwanted thought that worries you – or embarrasses you.  Like if you wanted to hit your brother or sister really hard if they were especially nasty to you.  Or you thought about what would happen if you suddenly blurted out a swear word in school or (worse yet) in church!  As bad as these thoughts may seem, it’s not abnormal for “bad” thoughts to come into your mind now and then.  It happens to everyone.

Or maybe you started noticing that everyone in class seems to have a cold or a virus.  They cough and sneeze without covering their mouths and never seem to wash their hands.  You just “know” you’re going to get sick.  Well, give yourself some points for noticing their bad manners – that kind of germ-spreading is just plain gross.

But if the “bad” thoughts about hurting someone or the fears about germs keep coming back, are getting worse and worse, or you’re really stressed out that you might do something bad or that you can’t stop washing off the germs, then it’s time to have a talk with your parents and let them know you’re concerned.  Don’t worry if your parents don’t really understand what you’re talking about; they may not know about OCD.  Just hang in there and try to be as patient as you can so you can all work things out together.

Is it OCD?

OCD is diagnosed when obsessions and compulsions

• Consume excessive amounts of time (an hour or more each day; for some kids, it's a LOT more than an hour a day)
• Cause significant distress
• Interfere with normal routines, including school or work, social activities or family relationships

With OCD, you can’t get the thoughts and worries (obsessions) out of your head, and the things you do physically or mentally to try to make yourself feel better (compulsions, or rituals) take up a too much of your time and energy.  Unfortunately, no matter how many times you do the rituals, you only feel better for a while.  And the more you do the compulsions, the obsessions only seem to get stronger.

What are OCD Symptoms?

There are so many different symptoms of OCD that we couldn’t possibly list them all here.  But some of the more common examples of OCD obsessions and compulsions are:

• An obsessive fear of being contaminated by dirt, germs, viruses (or any number of other things like chemicals or blood) that can result in compulsive hand washing, body washing, or even cleaning your room or the home you live in; avoiding touching others or shaking hands; avoiding public places.
• An obsessive uncertainty about something or fear of harm (to yourself or others) that may result in compulsive checking to make sure that doors or windows are locked or appliances are turned off.
• An obsessive fear of loss (or losing something important) that may result in compulsive hoarding of various objects (that is, you keep them and just can’t get rid of them).  Sometimes these are useless items (like scrap paper, broken shoelaces, used paper cups – you get the idea).  Sometimes you hoard things you think you might need some day – clothes you’ve grown out of, old newspapers, leftover food, old school papers – you can probably think of lots of examples.
• An obsessive fear of breaking religious rules or sinning that may result in compulsive praying, confessing sins or believing God is mad at you.  This is called Scrupulosity.  Some people with this condition have to repeat the prayer until they get the wording “perfect” and, if interrupted, have to start praying all over again.
• An obsessive need for symmetry that may result in a compulsive need to constantly “even up” or arrange objects in a certain order.
• An obsessive need for perfection that may result in compulsively seeking reassurance, or compulsive revisions (including revisions to school work) so things are “perfect.”

Remember that instead of getting weird or scary thoughts, OCD sometimes makes you have certain urges or feelings that you “have to do” something until it looks, sounds, or feels “just right” or “just so.”  So at school, you may have to get in and out of a chair a bunch of times until it feels “just right.”  Or maybe you have to keep arranging things in your desk until they look right.  Maybe the way your mom said “Good night” wasn’t right, so you have to keep asking her to say it until it sounds right.  You might even just have an urge to tie and retie your shoelaces until it seems OK to stop.

The majority of teens with OCD are able to function reasonably well, and friends or teachers may not even suspect there is a problem.  But when symptoms worsen, it’s time to get help.

Click here for more examples of OCD symptoms that may interfere with your normal routine and school progress

Treatment works.
Read personal stories of successful OCD treatment.

Does This Seem Like You?

If any of the examples sound like you, it doesn’t automatically mean you have OCD.  You should talk with your parents, your doctor or your teacher, though, because these fears and worries are getting in the way of a normal adolescent life.

Don’t be embarrassed – it’s a good thing that you’re noticing what the problem seems to be and are asking for help.

Your family doctor, or possibly your school, can help you and your parents find a mental health professional who can use some easy assessments to find out if you have OCD, or have any other disorders.

And above all, there really is hope.  Effective treatment is available for OCD and for other disorders, so you CAN get relief.

When you look around you, you may wonder how some of your classmates or neighbors seem to be so happy, and are able to take part in activities you wish you could get involved with (but can’t because of OCD, what you think might be OCD, or another  disorder).  In reality, some of them actually may have OCD or another disorder, but they’ve gotten effective treatment for it.  So their lives seem “normal.”

It’s never too late to get started feeling better.  Start by involving your parents.  Maybe there are some teachers or someone like a counselor at school you feel comfortable talking to.  For more information about OCD, treatment options and support groups, go to the links below:

 

More information and resources about OCD for teens and parents

Back to Just For Teens

What Other Symptoms Might Be OCD?

OCD doesn’t have to rule your life. If you’re struggling with symptoms like the ones you've read about on this web site, ask your parents to help you get treatment for OCD. It won’t go away by itself.

OCD symptoms can be as varied as the people who have them.  But there are some “warning signs” that can indicate OCD or another disorder.  Remember, OCD and other disorders ARE treatable.  Noticing what’s wrong is a step in the right direction toward getting better.

Could any of these situations describe your situation?

• You take so much time getting dressed in the morning that you’re constantly late for school.  Or between classes, you have to perform certain actions (like checking the lock on your locker) or mental rituals (such as praying, counting, saying certain phrases) over and over again, so you’re late for the next class.  Maybe you have to open and close your locker a certain number of times, or count your steps while you walk down a hallway.  Or when you’re leaving a room, you have to keep going in and out of it until it finally feels OK to leave it.  This could also happen when you’re going up and down stairs – you have to go up and down the stairs so many times in order to feel “right,” that you’re exhausted and late for your ride, the bus, your next class, meals, etc.
• You have a lot of trouble paying attention in class or concentrating on homework assignments because you’re constantly thinking about your fears or “bad” thoughts, and trying not to perform the actions that would temporarily make you feel better.  No matter how hard you try to get rid of the thoughts, they just won’t go away.  And you’d be embarrassed if anyone saw you perform your compulsive  actions in class or in public.
• You’re not able to complete in-class assignments or homework assignments because they’re “not done well enough” or aren’t “right,” and you always seem to run out of time.
• Your compulsive actions take up so much time at night that, not only is your homework not done, you’re also up so late that you’re not getting enough sleep.  And you’re so tired the next day you can barely make it through your classes.
• You used to get good grades, but now your grades have really slipped (and you realize it’s because the obsessions and compulsions are getting in the way of studying, participating in class or completing homework assignments).
• Your uncontrollable fears, worries and unwanted thoughts are severely straining a relationship – at home, with friends, or at school.
• You’re afraid you might seriously hurt someone because you can’t stop thinking about hurting them, or you keep having violent or bizarre thoughts about harming others.
• You believe your thoughts can actually cause things to happen or not happen.

If any of this sounds like you (or someone you know), speak up.  As hard as it might be to ask for help or to talk about obsessions and compulsions with your parents or someone at school, living with OCD is much harder.  The sooner you start getting treatment, the sooner you can start being more like the YOU you used to be.

OCD Spectrum Symptoms

There are a number of other disorders with some unusual symptoms that may be having a negative impact on your life.  Sometimes these disorders, which share certain similarities with OCD, occur along with OCD.  Some of the symptoms of these disorders, which have been called OCD spectrum disorders, include:

• You secretly pull out hair, bite your nails, or pick at your skin.  At first, you didn’t worry too much about it, but now you’re starting to see some “bare” spots in your hair, or your nails are so bitten that they bleed.  Maybe the spots where you’ve picked at your skin are starting to develop sores or scabs, but you continue to pick at them.  Now you’re afraid people will notice, but you can’t stop.  It’s very important to ask for help before these disorders get worse.

Other Related Symptoms

• Sometimes there are related disorders that are not OCD but may occur along with OCD.  These include depression, attention-deficit disorders, tic disorders (body, facial or vocal twitches or sounds), bipolar disorder, panic disorders (“panic attacks”), or feeling alienated from everyone else.
• It may seem you’ve always been concerned about your weight, but now you’re “obsessed” with it, constantly reviewing your appearance.  Maybe you’re not eating very much, or making yourself vomit after a meal to keep from gaining weight.  These symptoms aren’t just different; they can be dangerous to your health. 

While it may be hard to tell your parents or a teacher you trust that you’re experiencing symptoms that are just “not YOU,” you can get better a lot faster if you don’t keep hiding the symptoms.  You need to be evaluated by a doctor so you can get the right treatment for the right problem.  You owe it to yourself to get better, and get back to enjoying life!

 

More about treatment for OCD

Back to Just For Teens

What’s A Normal Worry and What’s Not?

Everyone has worries and doubts -- it’s part of being human. But OCD takes worries and doubts to the extreme.

Everybody worries at times.  It’s normal to worry about things like school, how you look, what you said or did in a certain situation, how your parents will react to something you did or what the future will bring.  That’s part of being a human being – especially, a teen.  But OCD takes worries and doubts to the extreme.  Let’s get down to what may be really bothering you.

Maybe you’ve had an unwanted thought that worries you – or embarrasses you.  Like if you wanted to hit your brother or sister really hard if they were especially nasty to you.  Or you thought about what would happen if you suddenly blurted out a swear word in school or (worse yet) in church!  As bad as these thoughts may seem, it’s not abnormal for “bad” thoughts to come into your mind now and then.  It happens to everyone.

Or maybe you started noticing that everyone in class seems to have a cold or a virus.  They cough and sneeze without covering their mouths and never seem to wash their hands.  You just “know” you’re going to get sick.  Well, give yourself some points for noticing their bad manners – that kind of germ-spreading is just plain gross.

But if the “bad” thoughts about hurting someone or the fears about germs keep coming back, are getting worse and worse, or you’re really stressed out that you might do something bad or that you can’t stop washing off the germs, then it’s time to have a talk with your parents and let them know you’re concerned.  Don’t worry if your parents don’t really understand what you’re talking about; they may not know about OCD.  Just hang in there and try to be as patient as you can so you can all work things out together.

Is it OCD?

OCD is diagnosed when obsessions and compulsions:

• Consume excessive amounts of time (an hour or more each day; for some kids, it’s a LOT more than an hour a day)
• Cause significant distress
• Interfere with normal routines, including school or work, social activities or family relationships

With OCD, you can’t get the thoughts and worries (obsessions) out of your head, and the things you do physically or mentally to try to make yourself feel better (compulsions, or rituals) take up a too much of your time and energy.  Unfortunately, no matter how many times you do the rituals, you only feel better for a while.  And the more you do the compulsions, the obsessions only seem to get stronger.

What are OCD Symptoms?

There are so many different symptoms of OCD that we couldn’t possibly list them all here.  But some of the more common examples of OCD obsessions and compulsions are:

• An obsessive fear of being contaminated by dirt, germs, viruses (or any number of other things like chemicals or blood) that can result in compulsive hand washing, body washing, or even cleaning your room or the home you live in; avoiding touching others or shaking hands; avoiding public places.
• An obsessive uncertainty about something or fear of harm (to yourself or others) that may result in compulsive checking to make sure that doors or windows are locked or appliances are turned off.
• An obsessive fear of loss (or losing something important) that may result in compulsive hoarding of various objects (that is, you keep them and just can’t get rid of them).  Sometimes these are useless items (like scrap paper, broken shoelaces, used paper cups – you get the idea).  Sometimes you hoard things you think you might need some day – clothes you’ve grown out of, old newspapers, leftover food, old school papers – you can probably think of lots of examples.
• An obsessive fear of breaking religious rules or sinning that may result in compulsive praying, confessing sins or believing God is mad at you.  This is called Scrupulosity.  Some people with this condition have to repeat the prayer until they get the wording “perfect” and, if interrupted, have to start praying all over again.
• An obsessive need for symmetry that may result in a compulsive need to constantly “even up” or arrange objects in a certain order.
• An obsessive need for perfection that may result in compulsively seeking reassurance, or compulsive revisions (including revisions to school work) so things are “perfect.”.

Remember that instead of getting weird or scary thoughts, OCD sometimes makes you have certain urges or feelings that you “have to do” something until it looks, sounds, or feels “just right” or “just so.”  So at school, you may have to get in and out of a chair a bunch of times until it feels “just right.”  Or maybe you have to keep arranging things in your desk until they look right.  Maybe the way your mom said “Good night” wasn’t right, so you have to keep asking her to say it until it sounds right.  You might even just have an urge to tie and retie your shoelaces until it seems OK to stop.

The majority of teens with OCD are able to function reasonably well, and friends or teachers may not even suspect there is a problem.  But when symptoms worsen, it’s time to get help.

Click here for more examples of OCD symptoms that may interfere with your normal routine and school progress

Treatment works.

Read personal stories of successful OCD treatment.

Does This Seem Like You?

If any of the examples sound like you, it doesn’t automatically mean you have OCD.  You should talk with your parents, your doctor or your teacher, though, because these fears and worries are getting in the way of a normal adolescent life.

Don’t be embarrassed – it’s a good thing that you’re noticing what the problem seems to be and are asking for help.

Your family doctor, or possibly your school, can help you and your parents find a mental health professional who can use some easy assessments to find out if you have OCD, or have any other disorders.

And above all, there really is hope.  Effective treatment is available for OCD and for other disorders, so you CAN get relief.

When you look around you, you may wonder how some of your classmates or neighbors seem to be so happy, and are able to take part in activities you wish you could get involved with (but can’t because of OCD, what you think might be OCD, or another  disorder).  In reality, some of them actually may have OCD or another disorder, but they’ve gotten effective treatment for it.  So their lives seem “normal.”

It’s never too late to get started feeling better.  Start by involving your parents.  Maybe there are some teachers or someone like a counselor at school you feel comfortable talking to.  For more information about OCD, treatment options and support groups, go to the links below:

 

More information and resources about OCD for teens and parents

Back to Just For Teens

What Is Cognitive Behavior Therapy (CBT)?

Cognitive Behavior Therapy is a treatment for OCD that uses two scientifically-based techniques for changing a person’s behavior and thoughts: Exposure and Response Prevention therapy (ERP) and Cognitive Therapy.  CBT is conducted by a cognitive behavior therapist who has special training in treating OCD.

In ERP therapy, people who have OCD are placed in situations where they are exposed to their obsessions and gradually prevented from performing the compulsions that usually ease their anxiety and distress.

The first step in ERP is for you to describe to your therapist all of your obsessions and compulsions.  You have to be honest and tell him or her everything.  Otherwise, he or she won’t be able to help you as much.  Once you’ve described all your obsessions and compulsions, you and the therapist will arrange them in a list, ordering them from things that don’t bother you much at all to things that are the most frightening for you.  Then, the therapist would ask you to complete a task that involves one of the things on your list.  But don’t worry; the therapist will start with something low on your list – something he or she thinks you can handle.

Let’s say you have an obsessive fear of germs in public places, and that fear is pretty low on your list in terms of how much it scares you.  Your therapist will design a task for you that exposes you – or makes you face – that fear.  The task might be encouraging you to touch a public doorknob that you believe is dirty.  Here’s where the “response prevention” part comes in.  If your usual response would be to wash your hands immediately after touching the doorknob, the therapist would ask you to wait a period of time before you wash your hands.  As you repeat this exposure task (touching a public doorknob), the therapist would probably ask you to wait longer and longer periods of time before you wash your hands.  Over time, this gradual exposure and delayed response would help you learn to control your fear of germs in public places without washing your hands.  

It may seem weird, but this new way of confronting your fears head-on would actually lead to fewer and less intense fears or obsessions about germs.  Your brain basically learns that nothing bad happens when you stop performing compulsive rituals. 

You’d probably feel very upset when you first touched the doorknob – maybe even feel a little panicked.  But the good news is that the body has a wonderful capacity for something called “habituation” – anxiety will eventually go down without doing anything but letting time pass.  It’s something like jumping into a pool of cold water.  When you first jump in, the water may be so cold that you shiver.  But after a while, your body gets used to the cold temperature – it habituates – and you feel fine.

When your therapist helps you with ”exposures” like this (or other, more difficult kinds of situations involving your fears) over a period of time, your anxiety shrinks until it is barely noticeable or even fades entirely.  The therapist is then able to help you gain confidence and learn special skills to control the compulsions through the second form of therapy, Cognitive Therapy.

Cognitive Therapy (as applied to treating OCD) helps you understand that the brain is sending “error” messages.  Your therapist will help you learn to recognize these errors and respond to them in new ways to help you control your obsessions and resulting compulsions.  Cognitive Therapy is an effective treatment for many problems, and focuses on the meaning we attach to certain experiences that we misinterpret.  For example, if a friend passes you by without saying anything to you, you might interpret her action incorrectly and think “Mary doesn’t like me any more because she walked by without saying hello.”  And you might believe your thought is very important or meaningful.  Cognitive therapy helps us stand back from these thoughts, look at the evidence closely, and tell ourelves something more realistic or accurate.  For example, we might be taught to tell ourselves “Something is on Mary’s mind, but I don’t know what it is.”

Cognitive Therapy for OCD focuses on the experience of negative thoughts.  While most people easily dismiss such thoughts (e.g., “That’s a silly thing to think”), some people have certain beliefs that thoughts are always important.  So instead of being able to just forget about these negative thoughts, their beliefs cause them to react differently and might make them think “I’m a bad person for having such a thought!”  Research shows that believing that negative thoughts are important and attempting not to have “bad” thoughts actually produces the opposite effect!

Cognitive Behavior Therapy may seem unusual.  You may even doubt that it could possibly work. After all, you’ve probably already tried to resist your compulsions without much success.  But with the right therapist and enough time and support, CBT has helped many thousands of people (children, teens and adults) control their OCD.

Most CBT treatment is conducted at a therapist’s office (or other location) once a week with exercises to practice at home between sessions.  If the OCD is very severe, more frequent sessions might be needed.

Not all mental health professionals are trained in ERP therapy, so it’s important to find one who is.  Beyond OCD can help you and your parents find a treatment provider.

 

Read personal stories of CBT success

Find a treatment provider

Back to Just For Teens section

What the heck is OCD?

With OCD, “communication errors” occur when information is transmitted between different parts of the brain.  Certain chemicals that help transmit messages in the brain aren’t working like they’re supposed to.  This causes unwanted, disturbing thoughts, fears or worries, including thoughts that can be the opposite of what you really believe about things like religion, violence or sex.  For example, you KNOW you’d never hurt anybody, but the OCD makes you keep getting these strange thoughts and pictures in your head about punching someone really hard for no reason.  And these thoughts can really upset you. 

The thoughts themselves are bad enough.  But it’s the endless repetition of these thoughts, called obsessions, that can make you feel miserable and get in the way of a lot of other things you want to do.  It’s like having the thoughts stuck in your brain.

Sometimes instead of getting weird or scary thoughts, OCD makes you have certain urges or feelings that something has to be done “just right” or “just so.”  Like you have to keep rewriting a word until it looks OK.  Other people think the word you wrote the first or second time was fine, so you should just stop.  But they don’t get it; you have to keep writing it until YOU think it looks OK.  These OCD urges and feelings can make you feel very uncomfortable or even upset.

So what do you do?  Your brain figures out ways to make you feel better.  This is where compulsions, or rituals, come in.  If you’re unbearably afraid of germs, your brain might tell you to do a ritual like washing your hands over and over again, even until the skin is raw.  If your OCD makes you feel afraid of someone breaking into the house at night and hurting your family, your brain may tell you to check the door and window locks dozens of times before going to bed.  Or you may ask your parents to check the locks for you until they get so sick of it that they yell at you.  Maybe the teacher’s answer didn’t sound just right to you, so you have to keep asking her to repeat the answer until it does.  The problem is that these compulsions may make you feel better temporarily, but the obsessions just keep coming back.

There are a lot of symptoms of OCD.  To learn more, you can read about OCD symptoms on this web site, or check out other web sites listed in the More Resources section of this web site.

One thing is clear: you can’t make OCD go away by continuing to perform compulsions.  You need a treatment called Cognitive Behavior Therapy (CBT).

 

Read about OCD Symptoms

Learn more about CBT and getting control over your OCD

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What the Heck is OCD?

With OCD, “communication errors” occur when information is transmitted between different parts of the brain.  Certain chemicals that help transmit messages in the brain aren’t working like they’re supposed to.  This causes unwanted, disturbing thoughts, fears or worries, including thoughts that can be the opposite of what you really believe about things like religion, violence or sex.  For example, you KNOW you’d never hurt anybody, but the OCD makes you keep getting these strange thoughts and pictures in your head about punching someone really hard for no reason.  And these thoughts can really upset you. 

The thoughts themselves are bad enough.  But it’s the endless repetition of these thoughts, called obsessions, that can make you feel miserable and get in the way of a lot of other things you want to do.  It’s like having the thoughts stuck in your brain.

Sometimes instead of getting weird or scary thoughts, OCD makes you have certain urges or feelings that something has to be done “just right” or “just so.”  Like you have to keep rewriting a word until it looks OK.  Other people think the word you wrote the first or second time was fine, so you should just stop.  But they don’t get it; you have to keep writing it until YOU think it looks OK.  These OCD urges and feelings can make you feel very uncomfortable or even upset.

So what do you do?  Your brain figures out ways to make you feel better.  This is where compulsions, or rituals, come in.  If you’re unbearably afraid of germs, your brain might tell you to do a ritual like washing your hands over and over again, even until the skin is raw.  If your OCD makes you feel afraid of someone breaking into the house at night and hurting your family, your brain may tell you to check the door and window locks dozens of times before going to bed.  Or you may ask your parents to check the locks for you until they get so sick of it that they yell at you.  Maybe the teacher’s answer didn’t sound just right to you, so you have to keep asking her to repeat the answer until it does.  The problem is that these compulsions may make you feel better temporarily, but the obsessions just keep coming back.

There are a lot of symptoms of OCD.  To learn more, you can read about OCD symptoms on this web site, or check out other web sites listed in the More Resources section of this web site.

One thing is clear: you can’t make OCD go away by continuing to perform compulsions.  You need a treatment called Cognitive Behavior Therapy (CBT).

 

Read about OCD Symptoms

Learn more about CBT and getting control over your OCD

Back to Just for Teens

If your doctor prescribes medication for your child, asking the right questions can prepare you for any possible changes in your child’s behavior.

Asking questions before medication is prescribed will prepare you for any changes in your child’s behavior that may occur as well as any possible side effects. Here are some questions to ask the doctor about OCD medications and children:

• What is the name of this medication and what is it supposed to do?
• What are the possible side effects of this medication (short and long-term)?
• Is there any way to minimize the chances of having side effects?
• How quickly does this medication typically work?
• Will this medication affect my child’s behavior? If so, what should I look for?
• What is the effectiveness track record of this medication?
• Why do you recommend this drug instead of others?
• What possible drug interactions might there be? (Inquire about any prescription medications your child may be taking, such as antibiotics, allergy medications or any other medication for an existing short or long-term condition.) 
• Are there any possible adverse interactions with over-the-counter medications, for a cold, the flu, upset stomach, etc., or vitamin or herbal supplements? 
• Are there any possible adverse effects caused by foods? (Ask about effects of sugar, caffeine, milk, citrus – such as juices etc.) 
• How and when should my child take this medicine (e.g., empty or full stomach; in the morning or evening)?
• How long will my child need to be on the medication? 
• At what point will you know if a dosage adjustment is needed (and how often will you reevaluate the dosage)? 
• What should I do if my child accidentally misses taking a dose of the medication? 
• What is a “normal” side effect, and when is the side effect serious enough to require medical care? 
• Are there any other, more serious, side effects that require immediate medical attention?
• What should I do in an emergency, and how do I reach you?

Back to OCD Medication Information

Back to Helping A Child Who Has OCD

If ever there were a time to be proactive, it’s when your child exhibits behavior that may be symptomatic of OCD.  If you think your child may have OCD – or you’re not sure if the behavior is OCD, some other mental disorder or “normal” (but frustrating) developmental behavior – don’t wait.  Here are some steps you can take to get started and, if your child or teen is diagnosed with OCD, how you can make the most of treatment:

• Talk with your child’s doctor.  If you notice unusual behavioral symptoms that you think may be OCD or another disorder, tell your child’s doctor or pediatrician.  He or she should be able to give you information about a psychologist or other qualified mental health professional who can evaluate your child or teen.  Because not all professionals are trained and experienced in conducting CBT with children, it’s important to find a cognitive behavior therapist who is. In many cases, this will be a psychologist with a Ph.D., Psy.D., M.A. or M.S. degree, or a specially trained social worker. It’s also important to ensure that the therapist is willing to conduct treatment outside the office (e.g., in the school setting or home), via telephone or Skype, if necessary.
• If your child is diagnosed with OCD, insist on Cognitive Behavior Therapy (CBT).  Don’t agree to traditional “talk therapy” or other unproven “alternative” treatments for OCD.  CBT therapy is recommended by nationally-recognized medical authorities such as the American Academy for Child and Adolescent Psychiatry, the National Institutes of Mental Health, the Mayo Clinic and Harvard Medical School. Beyond OCD can help you find a therapist.
• Be involved in your child’s recovery process.  Your child or teen will work hard during CBT sessions with the therapist and will be expected to complete assigned “homework” between sessions.  In most cases, you’ll need to be involved in scheduling homework assignments and making sure your child completes them.  Find out the best way to communicate with the therapist (e.g., phone calls, emails), so he or she can provide you with feedback regarding how to best assist your child.
• Encourage your child.  Motivation and encouragement will help your child or teen be successful in gaining control over OCD.  Whether working out a schedule for completing CBT homework, juggling CBT assignments with school work, or relaxing your expectations about your child’s involvement in normal household chores, you can make a significant difference in your child’s attitude toward recovery.  Remember, too, that your child likely will become frustrated, tired or discouraged at times during the CBT process.  Your understanding and faith in his or her ability to succeed will help him or her get through the difficult times.  Talk with your child’s therapist about how to balance empathy and firmness during the treatment program.
• Bargain if you have to.  Some children and teens balk at going to therapy or doing their CBT homework assignments.  You may find that your son or daughter refuses to get into the car to go to therapy.  Or you may find yourself in a yelling match when your child won’t complete a daily CBT exercise because he or she doesn’t feel like it.  In these cases, you may have to resort to “bargaining.”  It’s essentially like providing an incentive or reward for participating in therapy.  Consider rewarding your child with something he or she particularly likes IF he or she goes to therapy and does all required assignments at home.  You could try it week by week.  The reward should be something that’s especially appealing to your child: a new article of clothing, a new music CD, a gift card, or even a special dessert.  Remember to find something that he or she likes; you may think going to a movie is a great reward, for example, but he or she may not.  Be creative.  A number of parents have reported good success with this approach.  And remember, YOUR reward will be your child’s success in therapy and overcoming OCD
• Avoid accommodating OCD behavior.  Parents and other family members frequently become involved in a child’s or teen’s compulsions.  And it’s not difficult to understand why they do.  Seeing a child experience emotional pain can be very difficult for family members.  In some cases, parents often just “give in” to keep peace in the home.  Unfortunately, accommodating your child’s rituals (e.g., completing rituals for them, providing reassurance, answering repetitive questions) only serves to reinforce them and can make OCD worse.  Many therapists regularly involve family members in CBT and teach them how to stop accommodating OCD behavior.  Talk with your child’s therapist about how you and your family can help – and not hinder – your child’s recovery.

Learn more about the family’s role in recovery

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Back to Helping A Child Who Has OCD

Teachers can be an important link in your child’s support network.

Teachers and other school personnel may be powerful allies in identifying, assessing and treating  OCD.  Because they interact with students for extended periods of time during the school year, they are uniquely positioned to observe behavior that deviates from the norm.  School personnel, therefore, may play a critical role in helping identify behavior that is symptomatic of OCD.  Symptoms of OCD may be apparent during various parts of the school day, including class time, study hall, recess, lunch, or during extracurricular activities.  Teachers and other school staff members may notice behavior that signals concern from an academic standpoint (e.g., a drop in grades); socially (student has become isolated and peer relationships have begun to suffer); emotionally (a previously happy student appears to be sad or depressed); or behaviorally (a student starts refusing to do assigned work). 

If a student is undergoing a mental health assessment, teachers can also provide important information by completing checklists or providing other pertinent student data (number of absences from school, test scores, grades, etc.).  This information can be very helpful in providing mental health providers a more well-rounded picture of a child’s overall functioning.

Once a child or adolescent is diagnosed with OCD, school personnel can play an extremely important role in treatment by providing the student any necessary supports for functioning successfully in school.  Beyond OCD created a special web site called the OCD Education Station, which has a wealth of information for teachers and other school professionals on this topic.

Learn more about the OCD Education Station

Many schools offer accommodations to help children who have OCD.  In severe cases, help may be available under federal law for children with disabilities.

“Stigma” versus Benefits

When a student’s OCD has a negative impact on his or her school functioning, he or she may be eligible for various school-based services.  For many students with OCD – frequently those with milder cases – those services may be obtained under Section 504 of the Rehabilitation Act of 1973.  Section 504 is a civil rights law that protects individuals with disabilities from discrimination.  Therefore, an educational program must be designed for students with disabilities to meet his or her individual needs to the same extent that the needs of students without disabilities are met.  In other words, Section 504 essentially levels the playing field for students with OCD.  Interventions in the form of accommodations are documented in what commonly is referred to as a “504 plan.”  Accommodations include providing extra time to take a test, allowing a student to do a written assignment on the computer instead of writing by hand, and countless others.

Many students with OCD, particularly those with more severe cases, may receive services under the Individuals with Disabilities Education Act of 2004 (IDEA), the federal law governing special education and related services.  To be eligible for special education services under IDEA, a student must be between the ages of 3 and 21 (or as defined by state law) and meet the definition of either a preschool child with a disability or one or more of 13 disability categories listed in IDEA (experts in the field strongly recommend that students with OCD be identified under the IDEA category “Other Health Impaired”).  Moreover, the disability(ies) must have an adverse effect on the student’s learning, social and emotional functioning.  A comprehensive evaluation is required to determine if a student has a disability that negatively affects his or her school functioning.

If a student does meet eligibility criteria under IDEA, an individualized education program, or IEP, must be written.  The IEP is an extremely detailed written document outlining all special education and related services the student should receive.  It essentially serves as a blueprint for how the child is to be educated.

As a parent, trying to determine if your child is eligible for services and if so, whether to seek them under Section 504 or IDEA, can be confusing.  A brief comparison of these two laws may be helpful. 

In many cases, Section 504 is the appropriate vehicle for providing needed accommodations and interventions for students with OCD.  Section 504 provides a quicker and more flexible means for supporting these students in the school setting. Section 504 may also be preferred over IDEA by parents and students who fear potential stigma associated with special education and related services.  However, the requirements for a free, appropriate, public education are more detailed under IDEA than in Section 504.  IDEA also includes more rights and safeguards for students with OCD and their parents than Section 504.  Therefore, if a student with OCD is struggling with academic, social, and/or behavioral problems, it may be preferable to seek special education and related services under IDEA.

If OCD is negatively affecting your child’s school performance, there are a number of steps you can take to help you find the support he or she needs:

• Go to our additional special web site, the OCD Education Station.  It provides a wealth of information regarding students with OCD, school-based difficulties they may experience, and strategies to help them better function in the school setting.
• Talk with other parents whose children have already experienced problems with OCD in school and ask them what approach they took as well as the type of services their child received.
• Attend a local support group for parents of children with OCD.  It is likely that some or even many of these parents will have worked with school personnel to obtain supports and accommodations for their children.  They may be able to provide invaluable suggestions about how to approach schools as well as how NOT to approach schools.
• Learn more about the Individuals with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 (web sites containing more information are listed in the More Resources section of this web site).
• If you are encountering great difficulty with the school in your attempts to get services for your child, you may want to consider contacting an expert in special education or an attorney who specializes in disability law.  He or she will be able to provide important information about your child’s rights to a free, appropriate education.

Learn more about OCD and education

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Your Child Can Get Better With Effective Treatment

The benefits of OCD treatment are so great that exploring financial options to pay for it is worth the effort.  OCD rarely goes away by itself, and usually grows stronger without treatment.

Money concerns can certainly present challenges to getting OCD treatment.  If financial difficulties are keeping you from seeking help to overcome your child’s OCD, it may be  possible to find a method to reduce or finance the costs of treatment.  Here are some ideas for how to pay for treatment or stretch limited dollars to get help.

Insurance

If your child is of an age that qualifies him or her as a dependent under your own health insurance policy, contact your insurance carrier to discuss coverage.  Be sure to ask about the following issues:

• Which services are covered in the health plan?
• Is there a list of preferred therapists for CBT treatment of OCD?
• What percentage of charges will be covered?  Some insurance companies pay more if a treatment provider is in the company’s “network” of providers, and pays a lower percentage of fees if the provider is “out of network.”
• Does the policy have annual or lifetime limits for mental health services?

If your child is a college student, contact the student health center or counseling center at the college or university he or she attends.  Many colleges offer student health insurance, which may include coverage for mental health services at deeply-discounted rates or even free of charge.  Some colleges and universities have on-staff psychologists who are trained to offer Cognitive Behavior Therapy. 

Campus services may also be able to make referrals to psychologists in private practice who are trained and experienced in providing Cognitive Behavior Therapy.

In addition, if your child qualifies, disability benefits may be available through Social Security.  Certain low-income individuals who cannot afford to pay for medical care can apply for benefits under Medicare or Medicaid.

Therapists

Some cognitive behavior therapists offer a sliding scale of fees, which are fees based upon one’s ability to pay for services.  You should explain your financial situation clearly and, if necessary, try to work out a payment plan that extends over a period of time. 

Because the only effective, scientifically-supported therapy for OCD is CBT, sometimes in combination with prescription medication, it’s important not to waste time or money on unproven, ineffective therapies.  At this time, there is insufficient evidence to support the use of treatments such as hypnosis, herbal or homeopathic remedies, relaxation therapy, eye movement desensitization reprocessing (EMDR) or dietary changes.  And psychoanalysis and therapies that focus on family dynamics, early childhood trauma or issues of self-esteem are not effective treatments for OCD.  While certain forms of therapy, such as marriage and family counseling, can help with relationship problems and other difficulties that frequently accompany OCD, CBT and medication represent the cornerstone of treatment for OCD.

It’s important to note that meditation, yoga and exercise can complement formal treatment for OCD.  Many people find these tools to be extremely effective in helping reduce anxiety and facilitating the treatment process.

It’s also critical that any therapist you contact be trained and experienced in Cognitive Behavior Therapy.  Keep looking if the therapist has never conducted CBT with children and adolescents.  When you contact a therapist about OCD treatment, asking the right questions can save you time and sometimes money.  Learn more questions to ask a prospective therapist.  An appropriate amount of “due diligence” in selecting a therapist will ultimately result in finding a qualified and experienced CBT therapist.

You may also want to contact your local mental health association for names of cognitive behavior therapists and for information regarding any kind of financial assistance that may be available for treatment.

Medications

If your son’s or daughter’s therapist recommends the use of OCD medication in conjunction with Cognitive Behavior Therapy, it may be possible to obtain drugs at a reduced price.  A number of resources offer information about prescription assistance, including:

• Partnership for Prescription Assistance Call 1-888-4PPA-NOW or Visit this site
• Needy Meds Visit this site

You can also try some of the following:

• Ask the prescribing doctor whether a generic form of the medication prescribed is available.  Generic drugs generally are less expensive than “name brand” medications.  For example, fluoxetine, a generic medication, is far less expensive than Prozac, the brand name of the drug.
• Call various pharmacies to find the one that offers the medication at the lowest cost.
• Ask pharmacies if ordering a three-month supply would lower the cost.  Some insurance companies offer discounts on co-pays for prescriptions if the medications are ordered in 90-day supplies by mail or online.
• Even though you want to save money, it’s very important to avoid ordering medications online from unknown sources.  Some web sites offer easy access to “doctors” who will write prescriptions that are filled by online “pharmacies.”  In some cases, junk email messages offer discounts on prescription medications, which are often filled in foreign countries.

The prices of drugs sold by some unknown sources may be attractive and far lower than those offered by local and reputable online pharmacies.  But there are many confirmed reports of online shoppers receiving fake medications.  In fact, when analyzed, some of these drugs were actually found to contain harmful substances including contaminated powders and, in one case, cement powder!  Obviously, you would never want your child to risk taking counterfeit medications.

Financing Options

Medical Credit Lines.  Some doctors offer lines of credit to help patients pay for services that might otherwise be financially out of reach.  If this is a payment method you choose to use, read the fine print carefully to understand the interest rate you will be charged before you sign the credit agreement.  Some providers’ interest rates will be similar to that of a credit card; some will be more expensive.  Choose carefully, because finance charges can add up quickly over the life of the loan or payback period.

Personal Credit.  Another option is to talk with your bank about a personal loan or credit line.  Again, be sure to read the disclosure information, and talk with a personal banker about calculating the total cost of finance charges until the amount borrowed is paid back.  As with a credit card, if you make only the minimum payment every month, you can actually end up owing significantly more than the amount borrowed in a short period of time, because finance charges are added to the principal amount borrowed.

The key to borrowing money for any purpose is to fully understand the total cost up front—before you sign anything—and commit to a disciplined payment schedule, so you don’t put undue financial stress on your family.

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Be proactive. The longer OCD is left untreated, the more difficult it can be for your child to overcome this disorder.

Parents can influence their children’s behavior in many ways.  That’s why it’s urgent that you help your child or teen seek out and participate in Cognitive Behavior Therapy (CBT).  You have the power to help –  or hinder – your child’s progress toward getting relief from OCD.

The Power of Knowledge

This may seem obvious, but the more you know about OCD and its treatment, the better the position you’ll be in to help your child.  We encourage you to:

• Learn about the symptoms of OCD.  By understanding OCD, you’ll be able to recognize its warning signs and better appreciate what your child goes through as he or she struggles with this disorder.
• Learn about CBT.  This is the only scientifically-supported behavioral treatment for OCD and the one most recommended by experts in the field.  In some cases, medication is prescribed along with CBT.  Therefore, it’s a good idea to familiarize yourself with issues related to medications for OCD, as well.
• Stay informed.  Beyond OCD wants you to have current, easy-to-understand information.  That’s why we’ve developed this web site.  And take advantage of Beyond OCD ’s recommendations for other reference materials and books in the More Resources and News & Events sections of this web site.

Be Proactive in the Fight against OCD

Left untreated, OCD frequently gets worse.  Making excuses for behavior your child exhibits that may be symptoms of OCD won’t help.  Nor will simply hoping your son or daughter is going through a phase and will just “grow out of it.”  By being proactive and taking action, you’ll greatly improve your child’s chances of successfully gaining control over this potentially debilitating disorder.

Learn more about proactive steps you can take to help your child

The Role of the Family

It’s obvious that family members – including extended family members – are integrally involved with OCD.  When a child has OCD, everyone is affected by and has to live with it.  But as a parent, you’re in a position to influence how the entire household operates and encourage everyone – including extended family members – help the child with OCD.

Let siblings know, for example, that the child with OCD is actively working on getting better.  Try to foster understanding and model for them examples of how they can interact positively with their brother or sister rather than react with anger or name-calling.  Research has actually shown that by being critical or hostile, family members can worsen OCD symptoms.

It’s also important to be honest with everyone; no one likes OCD, including you.  And especially not the child who battles this disorder.  Encourage family members to try, to the greatest extent possible, to separate their frustration and dislike for the disorder from the person who has it.  It’s not the child’s fault he or she has OCD.

Many therapists regularly involve families in CBT.  In fact, of the studies examining CBT for children and adolescents with OCD, those in which families were actively involved in CBT reported among the highest levels of improvement.  Talk with your child’s therapist about how you and your family can play a role in your child’s recovery program.

Learn more about the role of the family -- and friends -- in OCD recovery

Should I Tell My Child’s Teachers About OCD?

Parents must balance privacy concerns against the potential benefits of having teachers as allies in your child’s fight to overcome OCD.

It’s ultimately your decision about whether or not you inform the teachers at your child’s school his or her OCD.  Some parents may not wish to tell school personnel about their son’s or daughter’s OCD because of the stigma that is sometimes associated with mental illness – even in this day and age.  In some cases, parents are concerned that if they confide in their child’s teachers, confidentiality somehow may be breached. 

But there are several potential concerns associated with not informing school personnel.  First, OCD symptoms tend to wax and wane (get worse and then better).  The possibility always exists, therefore, that even if OCD symptoms currently aren’t evident in school, they may be in the future.  If symptoms do become problematic, teachers who lack background information about the student understandably may rely upon faulty explanations and make incorrect assumptions about those difficulties (e.g., the child is inattentive, noncompliant, unruly, etc.).  Students may even be punished for OCD behavior because it was interpreted as aggressive or disruptive.  Second, if a child is on medication for OCD, school personnel need to be aware of its impact on a student’s behavior, including any potential side effects.  Educators who are informed about a student’s OCD are in a much better position to understand his or her behavior and provide supports that are crucial to successful school functioning.

Learn more about OCD and the school

What Information about OCD Should My Child (or Teen) Have?

There are many good books that provide information about OCD for children and adolescents.  You’ll find Beyond OCD ’s recommendations in the More Resources section of this web site.
For younger children:

• Some of the books for younger children include a parents’ guide to sharing the book with a child.
• Some books include games, assignments or even art projects that can help a child understand and cope with OCD.
• You can also read Personal Stories written by children who have been successfully treated with CBT.  These inspiring accounts are in the Personal Stories section of this web site.

Visit the Just for Teens section of this web site

For teens and young adults:
Depending on your teen’s age, reading level and maturity, you may select books or web sites from those listed in the More Resources section of our web site for them to read..
You can show them sections of this web site, or print out sections you think would be helpful for them to read.

• You can direct them to the Personal Stories section of this web site to read stories of young people and adults who have experienced relief from OCD by undergoing CBT.
• You can direct them to the “Just For Teens” section of this web site, a section designed for teens who are affected by OCD.  This section includes some recommended reading, specifically for teens, including an article and a book.

Back to Helping A Child Who Has OCD

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Don’t be discouraged by some set-backs along the way. Learn about common barriers to success so you can have an action plan to keep improvement on track.

Getting appropriate treatment for OCD and committing to a treatment plan are key to achieving relief from OCD.  But even as your child’s behavior improves, he or she may experience set-backs; it’s difficult to consistently sustain improvement. You should be aware of a number of barriers that can hinder successful treatment:

Underdiagnosis and Undertreatment

Even though OCD is a relatively common illness and effective treatment is available, OCD is frequently underdiagnosed and undertreated.  There are a number of reasons why:

• Hiding symptoms:  In some cases, help isn’t sought because children can be very secretive and hide their symptoms. At first, you may not even notice your child’s symptoms.  Once OCD is diagnosed and children are doing CBT, they may hide their symptoms to avoid having to do the Exposure and Response Prevention (ERP) therapy exercises at home.
• Compulsive avoidance:  Avoidance isn’t always recognized as an OCD symptom. It may not be obvious to you initially, but your child may be avoiding certain places, activities or people.  It’s natural for children to gravitate toward certain places, activities and people more than others.  But extreme avoidance can signal that the child is trying to make irrational fears (the obsessions) go away; avoidance is his or her compulsion.  For example, a child who has severe contamination obsessions may avoid school and other public restrooms, refuse to use public water fountains and decline invitations to play or sleep over at friends’ homes.
• Discomfort discussing symptoms:  OCD can involve unwanted thoughts with disturbing content, including violence, sexuality (e.g., homosexual, paraphilic, or pedophilic obsessions), blasphemy and illness.  Your son or daughter may be extremely uncomfortable discussing these thoughts, even with a treatment provider.  A person with OCD normally has no desire to act on these thoughts, which recur precisely because they are so upsetting.  Cognitive behavior therapists are trained to work with children and adolescents whose lives are impaired by such intrusive thoughts.
• Difficulties with diagnosis:  Not all mental health professionals know how to diagnose and treat OCD, especially in children and adolescents.  At routine check-ups, many doctors fail to ask questions about a child’s mental health.  Some professionals – even psychiatrists – lack training in recognizing symptoms of OCD. 
• Ineffective or inappropriate treatment:  Some psychologists and psychiatrists still rely on unproven, ineffective therapies to treat OCD.  Psychoanalysis and therapies that focus on family dynamics, early childhood trauma or issues of self-esteem are not effective treatments for OCD.  While certain forms of therapy, such as family counseling, can help with relationship problems and other difficulties that frequently accompany OCD, only CBT can reduce the actual symptoms of the disorder.  In some cases, treatment providers only prescribe medications to treat OCD because they’re unfamiliar with Cognitive Behavior Therapy and don’t realize it’s the treatment of choice for children and adolescents with OCD.  As the parent of a child who suffers from OCD, you need to find a therapist who is trained in CBT.  Beyond OCD and other resources listed in the More Resources section of this web site can help you find the right person.  Your child’s future depends on it.
• Unrecognized symptoms:  Like avoidance, there are many common, but less familiar, symptoms that may not be recognized as signs of OCD.  The disorder can take many forms and isn’t limited to familiar or obvious types of OCD such as compulsive washing or checking.  Examples of symptoms that can go unrecognized include:
  • Procrastination
  • Difficulty making decisions or inability to make a decision
  • Asking repetitive questions
  • Continual reassurance-seeking  
• Fear of change:  Change can be difficult.  It takes courage to make changes and face fears, particularly if the obsessions and compulsions have existed for many years.  Some children or adolescents with OCD are afraid to begin treatment, but living with untreated OCD is vastly more painful than any discomfort associated with treatment.  Your child must learn to overcome and manage his or her  OCD symptoms to be able to have a more normal childhood, teenage experience and adult life.

When Money is a Problem

Treatment for OCD is usually not available free of charge, so you may need to be creative about how you plan to pay for CBT therapy (and medication, if your child’s doctor prescribes medication).

Some people who have OCD are not able to afford treatment for their child.  Those without health insurance, or whose insurance policies do not fully cover mental health care, sometimes struggle to get the treatment they need.  Some cognitive behavior therapists make treatment more affordable by offering fees on a sliding scale to clients with low incomes.  This means that the fee is based upon one’s ability to pay. 

If your child’s cognitive behavior therapist recommends the use of medication in conjunction with CBT, you may be able to obtain drugs at a reduced price.  A number of resources offer information about prescription assistance, including:

• Partnership for Prescription Assistance 1-888-4PPA-NOW or www.pparx.org
• Needy Meds: www.needymeds.com

Learn more about why treatment may fail and what you can do about it

Back to Helping A Child Who Has OCD

Cognitive Behavior Therapy (CBT) has been shown to have many benefits over medication alone in treating OCD in children and adolescents.  It tends to be faster-acting and more cost-effective over time, and it doesn’t involve the risk of side effects.  Furthermore, studies have consistently shown that the positive gains associated with CBT are longer-lasting than those of medication; relapse rates are lower when CBT is discontinued than when medication is stopped.  

In some cases, however, medication is prescribed in conjunction with CBT.  It may be helpful, for example, when OCD is moderate to severe or if there are coexisting disorders, such as depression, that impede a person’s ability to do CBT.  Medication is often prescribed on a temporary basis; once the child is able to better manage the anxiety and stress during CBT, the medication may be tapered off and then eliminated.  

It’s important to work with a physician (for example, a psychiatrist) who is experienced in prescribing and monitoring different medications for OCD in children and adolescents.  The physician should advise you about the possible side effects of medications, assess their effectiveness, and, if appropriate, provide instructions for tapering off the dosage.  Medications should never be discontinued abruptly. 

Antidepressants classified as serotonin reuptake inhibitors, which include serotonin-specific reuptake inhibitors (SSRIs), have been shown to be the most effective medications for children and adolescents with OCD.  Because body chemistry differs so much across individuals, the type and dosage of medication prescribed will vary.  Some children with OCD respond well to the first drug prescribed; others must try more than one (under close medical supervision), to find the medication that produces the best results. 

Most of these medications do not produce immediate relief from OCD symptoms.  Some may begin to work after a few weeks, but it may take 10 to 12 weeks at therapeutic doses to be effective.  In fact, many individuals experience only side effects during the first few weeks of treatment.  But after a period of time, they may see a big improvement in their symptoms.  CBT may begin at any time after medication is prescribed, depending on the person’s reaction to the drugs.

The best way to enhance the effectiveness of medication is to add behavior therapy to ongoing drug treatment.  But when OCD isn’t responsive to CBT and trials with a number of different SSRIs, physicians sometimes add another drug to boost a particular medication’s effectiveness, overall.  This is known as augmentation therapy.  

As difficult as it can be, parents must try to be as patient as possible throughout the process of trying to find the best medication for your child.  It’s natural to want immediate relief for your son or daughter, but the prescribing physician (e.g., psychiatrist) will most likely start with a low dose of medication and increase it, as appropriate.  You will play an extremely important role in terms of monitoring your child’s behavior and reaction to the medication, including side effects.

Questions to Ask the Doctor about Medication for Your Child

Your child’s doctor may recommend medication, and, as a parent, it’s natural to have concerns about medicating your child.  If this is the case, you’ll want to become knowledgeable about drugs used to treat OCD, how they work, and any possible side effects.  Be sure to talk with the doctor and ask questions to help you get the best information possible.

Questions to Ask your Doctor About OCD Medications

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A cognitive behavior therapist should be very agreeable to speaking with you about your child’s or teen’s OCD and answering your fact-finding questions.  You need to be comfortable with the therapist, because he or she will be guiding you through every step of your child’s treatment.  He or she will also be giving you advice, ideas and directions to help you manage your child’s progress between sessions.  It’s also extremely important that your child and the therapist are a good match, or “click.”

State-of-the-art treatment for OCD is Cognitive Behavior Therapy (CBT), which involves Exposure and Response Prevention (ERP) and Cognitive Therapy (CT), sometimes in combination with medication.  It cannot be stressed strongly enough that your child’s therapist actually be trained in CBT. 

If the therapist tells you that he or she treats OCD using talk therapy or role playing, walk away.  Keep in mind that supportive therapy (e.g., counseling) may help children manage conflicts due to OCD, including difficulties with school, peers and family members.  Family members may also benefit from supportive therapy (most CBT approaches involve families in treatment).  A parent may need direction in terms of how to handle angry struggles with the child, for example, or cope with family disruption and stress that often accompany OCD.  There is no evidence to support the use of talk therapy, however, to treat the OCD itself.

You should also walk away if you’re told that your parenting actions have caused your child’s OCD.  In addition, the therapist should be able to assess all of your child’s symptoms to determine if your child does, indeed, have OCD as well as any other coexisting disorders that require treatment.

Here are some questions to ask a prospective therapist:

• Do you have a background in child and family therapy?
• What techniques do you use to treat this specific form of OCD? (You’re looking for responses that include Cognitive Behavior Therapy and Cognitive Therapy.)
• Are you trained to use Cognitive Behavior Therapy, including Exposure and Response Prevention therapy, to treat OCD?
• Where did you obtain your training? (You’re looking for them to tell you about an established training program in cognitive behavior therapy.)
• Are you licensed to practice in this state? (Beware of unlicensed therapists.)
• How many children (or teens) with OCD have you successfully treated?
• Will you conduct therapy sessions (if necessary) by telephone, online or via Skype; are you willing to evaluate and treat OCD in the setting in which it usually occurs (e.g., home, school)?
• Are you willing to work with other professionals such as the primary care physician, school counselor or social worker to ensure a coordinated approach to treatment?
• How do you involve the family in the treatment of OCD? (You want a therapist who will teach parents how to monitor and support the homework assignments given to the child or teen.)

Avoid a treatment provider who:

• Believes that OCD is caused by childhood trauma, toilet training, self-esteem issues or family dynamics;
• Claims that the main technique for managing OCD is relaxation, talk therapy or play therapy;
• Blames parents or one’s upbringing for OCD;
• Seems guarded or angry at questions about treatment techniques;
• Claims that medication alone is a treatment for OCD; or
• Suggests your child will need years of therapy (CBT is not intended to go on indefinitely).

You can contact Beyond OCD to discuss therapy options for OCD.

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Because the quality of care your child receives is so important in his or her recovery, it’s important to find the right therapist to work with – specifically, one who is trained in conducting Cognitive Behavior Therapy (CBT) with children or teens.

If your pediatrician refers you to a psychiatrist, keep in mind that psychiatrists usually prescribe medication.  But medication alone is not considered the most effective treatment for OCD.

CBT involves the use of two evidence-based techniques: Exposure and Response Prevention therapy (ERP) and Cognitive Therapy (CT).  Because not all professionals are trained and experienced in conducting CBT with children, it’s important to find a cognitive behavior therapist who is.  In many cases, this will be a psychologist with a Ph.D., Psy.D., M.A. or M.S. degree, or a specially trained social worker.  It’s also important to ensure that the therapist is willing to conduct treatment outside the office (e.g., in the school setting or home), via telephone or Skype, if necessary.

If you have difficulty finding a cognitive behavior therapist, you may need to contact your local mental health association to get the names of trained CBT therapists who have experience working with children and adolescents with OCD.  If your city or town doesn’t have a mental health association, you might contact a local hospital and inquire about mental health clinics or staff psychiatrists.  You may also contact the psychiatry department of a local or nearby medical school or university psychology department.  Beyond OCD can also help you find a therapist.

While CBT doesn’t work for every single child, the majority of children gain significant – even dramatic – relief from their OCD symptoms.  Proper diagnosis and prompt, appropriate treatment can significantly improve your child’s chances of learning to manage the disorder and experience a happy and productive childhood.

Interviewing a Prospective Therapist

As you make a decision about choosing the right therapist for your child or teen, it will be extremely important to consider a number of crucial elements, including the person’s training, experience and personality (e.g., ability to establish a rapport with your son or daughter).  CBT will not be easy, so a good “patient-therapist fit” is vital; it’s important that both you and your child feel that the therapist is respectful, empathic, and competent. To that end, you will need to “interview” prospective therapists to be sure they meet the criteria for working with your child or adolescent.

Learn more about what to ask a prospective therapist

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In order to help your child, it’s very important that you be aware of a special kind of therapy called Cognitive Behavior Therapy (CBT) – the treatment of choice for all forms of OCD.  CBT makes use of two evidence-based techniques: Exposure and Response Prevention therapy (ERP) and Cognitive Therapy (CT).  

Exposure and response prevention involves controlled, gradual exposures to the situations that trigger a person’s obsessions and compulsions.  Over time, the person learns to respond differently to these triggers, leading to a decrease in the frequency of compulsions and the intensity of obsessions.  OCD symptoms often become so mild that they’re easily ignored; sometimes they disappear.

How It Works

The first step in ERP is for your child to provide the therapist with a detailed description of his or her obsessions and compulsions, which are then ranked from the least bothersome to the most difficult.  Beginning with easier symptoms on this hierarchy, the therapist will design “exposures,” or challenges, that put your son or daughter in situations that trigger obsessions.  During these exposures, your child will avoid performing compulsive behaviors (“response prevention”) for increasingly longer periods of time.

Through repeated exposures, your child will come to realize that anxiety increases temporarily, peaks and then decreases when he or she avoids performing compulsions.  In fact, the anxiety experienced when first confronted with this challenge will shrink until it is barely noticeable or actually fades away.  Your son or daughter will then be able to take on more challenging exposures until they, too, became manageable.  Effective ERP leads to “habituation,” which means that your child will learn that nothing bad happens when he or she stops performing compulsive rituals.

For example, if your child has an obsessive fear of germs, a therapist conducting ERP therapy might encourage your child to touch a doorknob that he or she believes is contaminated (the task, or challenge, would be based upon the child’s hierarchy list). Your son daughter will be coached to wait longer and longer to wash his or her hands.  This gradual exposure and delayed response helps him or her learn to control the response.  Over time, he or she will learn to respond differently to the fear or thoughts about germs, which would actually lead to a decrease in the frequency and intensity of the obsession.

Cognitive Therapy, the second technique involved in CBT, helps your child identify and modify patterns of thought that cause anxiety, distress or negative behavior.  In other words, CT helps him or her understand that the brain is sending “error” messages (e.g., the brain is “playing a trick” on him or her).  Through Cognitive Therapy, your child will learn to recognize these errors and confront the obsessions by responding to them in new ways.  For example, a child who says “I’ll get germs and get a disease from touching clay” may be taught to reframe his or her thinking by saying, “Lots of kids touch clay, and they’re perfectly fine!”

There is no way to predict exactly how long it will take for your child to gain control over his or her OCD symptoms.  Because every child is different, the therapist will design a program that fits the needs and circumstances of your child and family.  Most CBT treatment is conducted on an outpatient basis once a week with “homework” consisting of daily exposures to be completed between therapy sessions.  In severe cases, people may require more frequent sessions or even residential treatment.  Rarely, and only in special circumstances, is hospitalization needed (e.g., in extremely severe cases of OCD; if a child may be trying to harm himself or others; when multiple disorders are present, requiring extended observation and treatment; if reaction to medication needs to be closely monitored; or if a suicide attempt has been made).

CBT is the only form of behavior therapy strongly supported by research for the treatment of OCD.  Therefore, it’s extremely important to find a trained cognitive behavior therapist experienced in treating children and adolescents with OCD – usually a psychologist with a Ph.D., Psy.D., M.A. or M.S. degree, or a specially trained social worker.  Beyond OCD can help you find a treatment provider.

This treatment may seem unusual; you may even think it wouldn’t work.  Or perhaps your son or daughter has already tried to resist compulsions, without much success.  But with the right therapist and sufficient time and support, Cognitive Behavior Therapy has helped many thousands of children gain control over their OCD. 

Read personal stories of CBT success

How to choose a therapist

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Disorders that Commonly Coexist with OCD

Research has indicated that most children and adolescents with OCD have at least one other coexisting disorder, which can complicate diagnosis and treatment.  A mental health professional can evaluate your child and develop a treatment plan not only for OCD but also for any other disorders..

A number of disorders commonly occur with OCD, including:

MOOD DISORDERS:  MAJOR DEPRESSIVE DISORDER AND BIPOLAR DISORDER. Depression is more intense than a “bad mood” and lasts more than two weeks.  Symptoms of depression may include a persistent sad, empty or hopeless mood, loss of interest in usually pleasurable activities (such as sports or hobbies), decreased energy, difficulty concentrating, insomnia or oversleeping, irritability, weight gain or loss, and thoughts of death or suicide.  Bipolar disorder is marked by extreme changes in mood, thought, energy and behavior. Source:  Depression and Bipolar Support Alliance.

ANXIETY DISORDERS.  OCD is classified as an anxiety disorder.  Other anxiety disorders include Generalized Anxiety Disorder, Post-Traumatic Stress Disorder, Panic Disorder (panic attacks), Social Anxiety Disorders and specific phobias such as fear of spiders or flying.  All of these disorders include symptoms such as excessive worrying and fear.  But because each disorder is different, symptoms can be quite varied.  Source: Anxiety and Depression Association of America

ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (AD/HD).  There are three types of AD/HD: (1) predominantly inattentive type; (2) predominantly hyperactive-impulsive type; and (3) combined type.  AD/HD can occur in both children and adults.  Source: Children and Adults with Attention Deficit/Hyperactivity Disorder

EATING DISORDERS.  Disorders that involve serious disturbances in eating behavior include anorexia nervosa (self-starvation and excessive weight loss), bulimia (binge eating with compensatory behavior such as self-induced vomiting), and binge eating (recurrent overeating without compensatory behavior).  It is estimated that approximately 40% of people with eating disorders also have OCD.  Source:  National Eating Disorders Association

AUTISM SPECTRUM DISORDERS (ASDs).  People with ASDs experience difficulties with social interaction, communication and repetitive behaviors.  Individuals with Asperger’s Syndrome (the mildest and highest-functioning form of ASDs) have obsessive areas of interest, but these are enjoyable and bring them pleasure.  By contrast, OCD obsessions produce anxiety or distress.  Source:  National Institutes of Health

Obsessive Compulsive Spectrum Disorders

A number of comorbid disorders that share similarities with OCD are called Obsessive Compulsive Spectrum Disorders (OCSD).  Like OCD, these conditions should be treated by a qualified mental health professional.  Although professionals sometimes disagree with regard to which disorders comprise the OCSD, many experts include:

BODY DYSMORPHIC DISORDER.  People with Body Dysmorphic Disorder (BDD) are excessively preoccupied with their appearance – specifically an imagined or exaggerated flaw in their appearance.  They may think of themselves as ugly and are often obsessed with a perceived defect, such as a crooked nose.  They have difficulty controlling negative thoughts about how they look, even when others believe they look fine.  Source: Mayo Clinic

TOURETTE SYNDROME (TS) OR TIC DISORDERS.  Tics are sudden, rapid, involuntary and recurring vocalizations (such as sniffing or humming) and motor movements (such as blinking, shrugging shoulders).  TS is diagnosed when an individual has both motor and vocal tics that have existed for more than a year prior to the age of 18.  Source: Tourette Syndrome Association of America

TRICHOTILLOMANIA, SKIN-PICKING and NAIL BITING.  Compulsive hair-pulling (sometimes referred to as “Trich”), skin-picking, and nail biting are considered body-focused repetitive behaviors.  Symptoms of these conditions (respectively) include visible hair loss resulting from pulling hair out by the roots, noticeable (or hidden) scars,  scabs or sores, and nails that are bitten so severely that they are uneven and no nail extension is present.  Source: Trichotillomania Learning Center

Find Books about OCD and Related Conditions

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How OCD Is Diagnosed in Children

When a mental health professional evaluates your child, the exact approach used will vary from one individual to another.  A full evaluation by a psychologist or psychiatrist includes many components.  Ideally, a thorough psychiatric, developmental, and medical history should be performed to make an accurate diagnosis of OCD as well as any other disorders that may co-exist with OCD (e.g., depression, attention-deficit/hyperactivity disorder, Tourette Syndrome).  Care must also be taken to distinguish OCD behavior from behavior that may be a preference, habit, normal development, or simply "eccentric."  Therefore, it’s very important that your child be evaluated by someone who has experience treating children and adolescents with OCD.

Mental health professionals frequently use diagnostic interviews such as the Anxiety Disorders Interview Schedule for DSM-IV (child and parent version) or the Schedule for Affective Disorders and Schizophrenia for School-Age Children (present and lifetime version) to assist in making a diagnosis of OCD and determining the presence of other disorders.  Your child may also undergo a complete physical exam as part of the evaluation.

Once a diagnosis of OCD has been made, it’s important to establish how much distress and impairment your child is experiencing as a result of the OCD.  The most frequently-used tool for this purpose is the Yale-Brown Obsessive Compulsive Scale.  There are two versions – one for adults (Y-BOCS) and one for children (CY-BOCS).  The therapist will administer the CY-BOCS to both you and your child to try to pinpoint which OCD symptoms (i.e., obsessions and compulsions) are present and the severity of these symptoms.

A thorough mental health evaluation also includes a review of records, both medical records (such as immunizations and physical exams) and school records (such as grades and test scores).  Information regarding how your child functions in the school setting should also be included.  Because young people spend such a large part of their day in school, teachers and other school personnel are an extremely important resource in this regard.

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OCD doesn’t discriminate.  It affects children and adults of all races, genders and ethnicities, from every socioeconomic level, in all parts of the U.S. and across the world.

Some people wonder how OCD could have grown from a little-known condition just a few decades ago to one of such widespread proportions today.  They ask if OCD is a new disorder brought about by changes in society, or if parents are doing something differently today that has caused a spike in the prevalence of this disorder.

Is OCD a New Disorder?

OCD is not a new disorder.  But years ago, much less was known about it than is known today.  There were no consumer books written about OCD until the late 1980s.  Until relatively recently, information wasn’t readily available on the Internet.  And just decades ago, research on OCD was virtually nonexistent.  As a result, few tools were available to help professionals understand OCD – or to help struggling parents make sense of their child’s unusual behavior and treat it appropriately.  Even today, many physicians and other health professionals do not recognize the symptoms of OCD in children.

In the past, the stigma of having a child with a mental illness also caused many families to hide the truth for fear of gossip, discrimination and shame; many never even asked their family physician for help.  And for many families, access to mental health services was very limited.

Due to these factors, experts now believe that while OCD was present in children (and adults) in the past, the number of OCD cases was very much underreported, giving the impression that OCD is a “new” disease today.

Back to Helping A Child Who Has OCD

Certain movies and television programs have raised public awareness of OCD in an unusual and cruel way: by making a comedy out of a potentially debilitating disorder.  The character who has OCD is depicted as being “quirky” or “odd,” and some of the behaviors exhibited by the character, which are intended to evoke laughter, are actually  symptoms of OCD.  Anyone who has OCD will tell you that living with this disorder is no laughing matter.  When a child or adolescent has OCD, it’s all the harder to cope, because the obsessions and rituals are very confusing and may cause the young person much distress.

OCD symptoms can be as varied as the people who have them.  But although there are many forms of OCD in children, some symptoms are seen more commonly than others. The following information should give you a good idea of the general types of obsessions and compulsions that may signal OCD in children:

• Being preoccupied with religious observances; praying, saying prayers a certain number of times; excessive praying to atone for being "bad"; repeatedly needing to confess perceived "sins" or bad behavior

Obsessions	Compulsions
Fear of germs or contamination	Repeatedly washing hands, bathing, showering, using anti-bacterial wipes or hand-sanitizer Changing clothes, washing clothing or surfaces excessively; asking parents to wash clothing more than once to get it “really clean” Avoiding touching “dirty” surfaces such as doorknobs; avoiding touching others, not playing with siblings or wanting to be touched or kissed Avoiding contact play or sports -- either because of a fear of catching a disease or fear of contaminating another person or child Avoiding public places like malls or refusing to use public washrooms; avoiding certain areas of the home or school Seeking reassurance that they or others are not “sick” or “dirty”
Fears/feelings/urges related to numbers, e.g., "good" numbers, "bad" numbers, "magic" numbers	Touching objects a certain number of times; reading words or pages a given number of times (numbers may have a magical significance that may keep harm from occurring) Avoiding certain numbers that are "unlucky" or "not safe"; only using numbers that are "lucky" or "safe"
Fear of harm or danger; fear of harm, illness or death coming to oneself or others; fear of causing harm to others (such as causing a fire or accident); fear of acting violently or aggressively toward another person** **Note:   Individuals with OCD who have violent/aggressive thoughts neither have a history of violence nor act upon these urges or ideas	“Checking” behavior such as making sure doors and/or windows are locked, checking that parents are OK, making sure there are no monsters under the bed or in the closet  Counting, touching or saying/rewriting words a certain number of times to “magically” keep harm from coming to another; this could include silent counting or thinking words or prayers in a certain order Unreasonable avoidance of ordinary activities, places, animals or people for fear of causing harm
Fears/feelings/urges relating to losing or discarding something valuable or important (e.g., fears that something bad will happen or feelings of incompleteness if something is thrown away); fears of contamination that prevent an individual from touching an item; need to buy items in multiples of a particular number (OCD-based hoarding)	Saving useless items -- scraps of paper, candy wrappers, bottle caps, broken items; being unable to part with things that are not needed any more Holding onto items for fear that they might be needed sometime in the future, such as books, toys, food, school papers, clothing Accumulating items or objects because they are contaminated Buying multiples of the same item (buying 3 of everything because it's a person's magic number)
Fear of violating religious  or moral rules (scrupulosity)	Being preoccupied with religious observances; praying, saying prayers a certain number of times; excessive praying to atone for being "bad"; repeatedly needing to confess perceived "sins" or bad behavior
Fears/feelings/urges related to symmetry or order	Constantly "evening up" items or groups of items, such as books on a shelf or toys on the floor; aligning edges to be "right" or "even" Rearranging items to achieve a certain order, such as shoes on the closet floor, CDs on a shelf; clothing must be placed in a specific order or in certain color groups Avoidance of a particular room because of certain symmetry triggers (e.g., room with square tiles would trigger need to trace each of the edges with the eyes)
Fears/feelings/urges related to having something "just right," "just so" or "perfect	Repeatedly revising written words, letters, numbers to make them look “right” – may even erase written items until holes are worn through the paper Extreme slowness with activities, chores or school work -- making sure everything looks “right” or is done “just so” or in a certain order or pattern Repeating actions over and over for no apparent reason Excessively seeking reassurance that what has been completed is "right" or "perfect"
Fears/feelings/urges related to sexual content	Seeking reassurance regarding one's sexual orientation (e.g., seeking resurrance that one is not gay or lesbian, when he or she is actually heterosexual; seeking reassurance that one is not a heterosexual when he or she is gay or lesbian) Avoiding magazines, books, DVDs, etc., for fear of seeing something that will trigger sexual obsessions
Excessive doubting/dread of uncertainty	Constantly cxhecking and rechecking the contents of a book bag to be certain thgat all the necessary items are there Avoiding looking into a desk to prevent checking the contents

Other Behaviors that Could Be Symptoms of OCD

In some cases, children with OCD exhibit symptoms that may not immediately be associated with OCD.  Or their behavior may mimic symptoms of other disorders. Examples of some of these behaviors include:

• Eating rituals – some children with OCD may need to eat foods in a certain order; chew a certain number of times; refuse to eat certain foods (that they may have eaten in the past) because they are “afraid” to eat them; cut food into a specific number of pieces; or tap their fork or spoon a certain number of times before eating.  If they are unable to complete these rituals, they may refuse to eat.  It’s important to differentiate these OCD symptoms from symptoms of true eating disorders such as anorexia nervosa and bulimia.  (Note: Anorexia, bulimia, and other eating disorders may occur concurrently with OCD).
• Inability to make decisions – in some cases, young people experience serious concerns with regard to making the right choice (or a wrong choice).  The result may be an inability to or serious reservations about making any decisions at all.
• Extreme separation anxiety – some children, especially younger children, may have overwhelming fears of being left alone or that their parents or caregivers will leave and never return.  While this behavior is reminiscent of separation anxiety disorder, it may also signal OCD behavior: a child who fears that his or her parents will be harmed or even die.
• Unusual secretivity – children with OCD sometimes hide their activities or make their rooms or possessions “off limits” to siblings or parents.  Young people are frequently embarrassed by their rituals and want to keep them hidden from everyone.  As a result, they carry out their rituals in secret.  In addition, children who have contamination fears may not want anyone to touch anything in their rooms or their possessions.
• Temper tantrums when a normal routine is interrupted, or a seemingly routine activity is disrupted; inflexibility to the point of tantrums if even a small part of a bedtime ritual or other household routines are changed – for some children, rituals have to be repeated a certain or “magic” number of times.  If a child’s “magic” number happens to be 11, and he is interrupted on repetition number 10, he will have to start the ritual over from the beginning.  As a result, the child understandably experiences a great deal of frustration.  In addition, children who experience fears of harm to themselves or loved ones may become panicked if their rituals – which are intended to prevent harm – are interrupted.

It’s important that great care be taken when observing and documenting a child’s behavior so an appropriate diagnosis can be made.

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Parents don’t cause OCD in their children by some flaw in their parenting abilities. OCD isn’t caused by how you talk with your kids or don’t talk with them, or how you discipline them.  And it doesn’t matter whether or not both parents work, there is a stay-at-home Mom or Dad, the parents are divorced or a parent remarries after divorce.  Stress may make OCD worse in a child already predisposed to the condition, but your actions didn’t cause the OCD.

What Doesn’t Cause OCD

Brain Differences

Using neuroimaging technologies in which pictures of the brain and its functioning are taken, researchers have been able to demonstrate that certain areas of the brain function differently in people with OCD compared with those who don’t.  Research findings suggest that OCD symptoms may involve communication errors among different parts of the brain, including the orbitofrontal cortex, the anterior cingulate cortex (both in the front of the brain), the striatum, and the thalamus (deeper parts of the brain).  Abnormalities in neurotransmitter systems – chemicals such serotonin, dopamine, glutamate (and possibly others) that send messages between brain cells – are also involved in the disorder.

The Gene Connection

A study funded by the National Institutes of Health examined DNA, and the results suggest that OCD and certain related psychiatric disorders may be associated with an uncommon mutation of the human serotonin transporter gene (hSERT).  People with severe OCD symptoms may have a second variation in the same gene.  Other research points to a possible genetic component as well.  About 25% of OCD sufferers have an immediate family member with the disorder.  In addition, twin studies have indicated that if one twin has OCD, the other is more likely to have OCD when the twins are identical, rather than fraternal.  Overall, studies of twins with OCD estimate that genetics contributes approximately 45-65% of the risk for developing the disorder. 

It’s difficult to precisely estimate the chances that a parent will pass OCD on (i.e., genetically) to his or her child, even if one of the parents has OCD or has a family history of OCD.  In most cases, the chances are small that your children will have OCD.  If you’re a prospective parent and have concerns about whether your future children could inherit OCD, it’s best to talk with your doctor.  Many major medical centers have genetics counselors on staff or by referral who can discuss this issue with you.  The genetics of OCD is an area of active research, and new developments appear frequently.

Other Factors That May Contribute to the Onset of OCD

A number of other factors may play a role in the onset of OCD, including behavioral, cognitive, and environmental factors.  Learning theorists, for example, suggest that behavioral conditioning may contribute to the development and maintenance of obsessions and compulsions.  More specifically, they believe that compulsions are actually learned responses that help an individual reduce or prevent anxiety or discomfort associated with obsessions or urges.  An individual who experiences an intrusive obsession regarding germs, for example, may engage in hand washing to reduce the anxiety triggered by the obsession.  Because this washing ritual temporarily reduces the anxiety, the probability that the individual will engage in hand washing when a contamination fear occurs in the future is increased.  As a result, compulsive behavior not only persists but actually becomes excessive.

Many cognitive theorists believe that individuals with OCD have faulty or dysfunctional beliefs, and that it is their misinterpretation of intrusive thoughts that leads to the creation of obsessions and compulsions.  According to the cognitive model of OCD, everyone experiences intrusive thoughts.  People with OCD, however, misinterpret these thoughts as being very important, personally significant, revealing about one’s character, or having catastrophic consequences.  The repeated misinterpretation of intrusive thoughts leads to the development of obsessions.  Because the obsessions are so distressing, the individual engages in compulsive behavior to try to resist, block, or neutralize them.

The Obsessive-Compulsive Cognitions Working Group, an international group of researchers who have proposed that the onset and maintenance of OCD are associated with maladaptive interpretations of cognitive intrusions, has identified six types of dysfunctional beliefs associated with OCD:

1.  Inflated responsibility: a belief that one has the ability to cause and/or is responsible for preventing negative outcomes;

2.  Overimportance of thoughts (also known as thought-action fusion): the belief that having a bad thought can influence the probability of the occurrence of a negative event or that having a bad thought (e.g., about doing something) is morally equivalent to actually doing it;

3.  Control of thoughts: A belief that it is both essential and possible to have total control over one’s own thoughts;

4.  Overestimation of threat: a belief that negative events are very probable and that they will be particularly bad;

5.  Perfectionism: a belief that one cannot make mistakes and that imperfection is unacceptable; and

6.  Intolerance for uncertainty: a belief that it is essential and possible to know, without a doubt, that negative events won’t happen.

Environmental factors may also contribute to the onset of OCD.  For example, traumatic brain injuries have been associated with the onset of OCD, which provides further evidence of a connection between brain function impairment and OCD.

Sudden Onset of OCD Symptoms

Note: The information in this section is adapted from the article "Sudden and Severe Onset OCD - Practical Advice for Practitioners and Parents" by Dr. Michael Jenike and Susan Dailey.  The full article is available in the Expert Perspectives section of this web site.

Some parents have reported that OCD symptoms occurred almost overnight, as if a switch were flipped; their child went to bed as the child they knew and woke up a stranger.  For many years, this sudden onset of symptoms has been thought to occur in conjunction with a strep infection, which triggers OCD and/or tic symptoms in children who are genetically predisposed to the disorder.  This type of sudden-onset OCD came to be known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, or PANDAS.

In the more recent past, researchers and clinicians have found that although strep can be a trigger for OCD, it may not be the only trigger.  Non-strep diseases such as Lyme disease, mononucleosis and the flu virus (e.g., H1N1) may also cause similar neuropsychiatric illnesses in vulnerable children.  As a result, researchers have changed the name of the disease to Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS.  The two major criteria for PANS are (1) an abrupt and dramatic onset of OCD symptoms that is associated with significant impairment, and (2) the simultaneous, rapid onset of other symptoms from at least two of seven categories: anxiety, emotional instability and/or depression; irritability, aggression, and/or oppositional behaviors; behavioral regression; sudden deterioration in school performance; sensory or motor abnormalities, especially handwriting difficulties; and somatic, or physical signs and symptoms.

Currently, PANDAS and PANS are extremely under researched.  Until the time that appropriate treatment targeted specifically at PANS is available, treatments traditionally implemented in the treatment of PANDAS (e.g., antibiotics, exposure and response prevention, selective serotonin reuptake inhibitors) may be beneficial, depending upon the individual needs of the child.

In sum, although the definitive cause or causes of OCD have not yet been identified, research continually produces new evidence that hopefully will lead to more answers.  It is likely, however, that a delicate interplay between various risk factors over time is responsible for the onset and maintenance of OCD.

If Your Child Does Have OCD - Next Steps

If your child does have OCD, what matters most is what you do about it rather than  dwell on what may have caused it.  Your child is suffering, and you can help him or her get relief from OCD symptoms.

Effective treatment is available for your child, and you will need to learn how to help your child manage his or her OCD symptoms.  Talk with your doctor about treatment, and also read the information on this web site about choosing a therapist.

There really is light at the end of the tunnel, and many thousands of children who have OCD really do learn to control the “monsters” in their heads.

Read personal success stories from children and parents

What doesn’t cause OCD

Choosing a therapist

Back to Helping A Child Who Has OCD

As education and public awareness about OCD have grown, so has the use of the term “OCD” as a description of some kinds of behaviors that are not OCD.

When people use the terms “obsessed,” “obsessive” and “compulsive” incorrectly, it leads to misunderstanding about OCD.  You may have even heard someone say, “That child must have OCD” when describing a young person who is preoccupied with orderliness, has a strong interest in a subject or frequently performs the same activity (e.g., arranges a shelf or desk every day). 

Obsessive Compulsive Personality Disorder (OCPD) - Easily Confused With OCD

Obsessive Compulsive Personality Disorder is sometimes mistaken for OCD.  While the names are confusingly similar, the disorders are quite different.  OCD is an anxiety disorder, while OCPD is a personality disorder.

OCPD, which involves a preoccupation with orderliness, perfectionism and control in virtually every part of an individual’s life, is usually identified in early adulthood.  People with OCPD may spend an extraordinary amount of time cleaning their homes because they want them to be immaculate.  They may keep their closets extremely orderly and aligned and may become annoyed if their orderliness is disturbed.  Rather than being anxious about this, however, they see their behavior and thoughts as being OK.

Others may find OCPD behavior “odd” or extremely frustrating.  In fact, OCPD may interfere with a person's social relationships.  But it’s not OCD.  Individuals with OCPD like the world the way they shape it.  People with OCD, however, don’t like what’s happening to them and are overwhelmed by the thoughts and fears that intrude into their minds.  They want the obsessive thoughts, doubts, and urges that cause them to perform rituals to stop, but they don’t know how to silence “the monster” in their heads.

Age-Appropriate Routines and Games

It’s important to note that most, if not all, children display developmentally normal repetitive behaviors or routines.  Superstitions, ritualistic games, and repetitive play are characteristic of normal child development.  In fact, many childhood behaviors enhance socialization and advance development.  These activities are not indicative of OCD.  The examples below illustrate the difference between normal childhood habits and OCD behavior:

• Morning or evening routines or rituals:  Younger children frequently follow certain routines, which may involve their parents' participation.  They may want to get dressed in the morning in a specific sequence (shirt first, then pants, then socks) or eat breakfast in a certain order (a spoon of cereal followed by a sip of juice until the breakfast is completed).  They may also want a parent to read them a particular story over and over, or sing a particular song at bedtime.  These activities are comforting to the child and, as long as they’re age-appropriate, usually aren’t a cause for concern.
  
  However, a 12-year old is exhibiting worrisome behavior if he or she still feels compelled to perform these routines or rituals in order to get dressed, eat breakfast or go to sleep at night; becomes highly agitated if the routine is interrupted or changed; and is unable to stop performing the routine. 

• Childhood games:  Children frequently engage in repetitive games or songs.  For example, youngsters who enjoy playing the game “Step on a crack and break your mother’s back” and avoid walking on cracks are exhibiting normal development.
  
  By contrast, a child who has OCD might not be able to engage in this game, believing that, by stepping on a crack, he or she could cause serious harm to his or her mother.  As a result, the child would find this activity very distressing.

Other Non-OCD Behaviors

OCD does not include having a desire to collect items or being drawn to a particular area of interest such as stamps, coins, antiques, books by a favorite author or even science fiction fantasy or cartoon memorabilia.  Collectors find pleasure in the hunt for items they’re interested in, and they enjoy talking about their collections or showing them to others. 

Similarly, sports enthusiasts may talk about their favorite sport or recite a litany of sports statistics.  Normal, age-appropriate interests in a subject do not indicate the presence of OCD.

In older children, teens and adults, OCD is not characterized by fans who are reportedly “obsessed” with celebrities, including TV or movie stars, popular singers or professional sports team members.

Children or teens who have a “crush” on another person (especially a celebrity) do not have the crush because of OCD – even if they seem to be “obsessed” with wanting to read every magazine article about their “idol,” collecting fan memorabilia, participating in Twitter and online blogs, and wanting to buy every CD, MP3, DVD or video download of their favorite personality. 

It’s important to understand that popular magazines sometimes lead to misconceptions about OCD.  Criminal and violent behavior may be labeled "obsessive" and/or "compulsive."  Articles presenting information on stalkers may refer to these individuals as "obsessed."  Such portrayals can lead to inaccurate and sometimes disturbing descriptions of what people with OCD are like. 

In addition, OCD is not characterized by compulsive lying, shopping, gambling or other behaviors that reflect difficulties with impulse control.  People with these problems may suffer from treatable mental illnesses, but they do not have OCD.

Finally, it’s important to distinguish OCD from the unusual patterns of interest exhibited by people with autism spectrum disorder, who have an all-encompassing preoccupation with a narrow, restricted interest that is either abnormal in intensity or focus.

What are OCD symptoms?

What causes OCD?

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OCD is an anxiety disorder, which, like all anxiety disorders, is neurobiological in nature. It is neither something a child chooses to have, nor something over which he or she has any control – much like asthma or diabetes.  Young people with OCD aren’t being willfully disobedient or just trying to get attention.  They’re suffering from a real illness  that distresses them significantly enough to interfere with daily functioning and relationships.

OCD is characterized by obsessive thoughts, impulses, or images, and compulsions (overt or mental rituals) that are difficult to suppress and take a substantial amount of time and energy away from your child’s ability to live a normal life.  Everyday activities, such as going to school or work and interacting with friends and family, may become difficult, if not impossible.  And OCD can have a devastating impact on you and your family members.

Read the clinical definition of OCD

What OCD Isn’t

How To Recognize the Symptoms of OCD in Children

Obsessions are fears, worries and bad thoughts that pop into your child’s mind and won’t go away.  Some children have described these thoughts as like having a monster locked inside their heads. It’s always there, and it’s always active, making fears and bad thoughts happen. Understandably, obsessions can lead to great distress.  In some cases, children experience uncomfortable feelings or urges that something has to be “just right” or “just so,” rather than discrete obsessions. 

In response to these obsessions and feelings of discomfort, the child engages in compulsions, or rituals, to feel better.  Thus, washing rituals may be performed in response to feeling contaminated.  Or a word may need to be written or rewritten until it feels “just right.”  And when a child’s rituals are interrupted, he or she may become upset, agitated or angry.  Rituals may make your child feel better temporarily, but unfortunately, the obsessions just keep coming back.  And in time, he or she may be engaging in more and more compulsions.

OCD is diagnosed when obsessions and compulsions are time consuming (take up at least an hour a day; for many individuals, OCD consumes many hours of the day), cause significant distress and interfere with daily functioning in school, social activities, family relationships or normal routines.

OCD behaviors can be confusing, and in many children, obsessions and compulsions “shift” from one focus to another.  As a parent, you are in the best position to observe your child’s behavior and recognize potential signs of OCD.  Therefore, it is vital that you learn to recognize symptoms of this disorder in children. It’s also very important for you to know that nothing you did as a parent actually caused your child’s OCD.

Learn more about OCD symptoms

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The DSM-IV-TR (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision) provides clinicians with official definitions of and criteria for diagnosing mental disorders and dysfunctions.  It is usually considered the "gold standard" for mental health professionals in the United States.

Diagnostic criteria for Obsessive-Compulsive Disorder (Code 300.3)

A.  Either obsessions or compulsions:

     Obsessions as defined by (1), (2), (3), and (4):

     (1)  recurrent and persistent thoughts, impulses, or images that are experienced, at some time during the disturbance, as intrusive and inappropriate and that cause marked anxiety or distress

     (2)  the thoughts, impulses, or images are not simply excessive worries about real-life problems

     (3)  the person attempts to ignore or suppress such thoughts, impulses or images, or to neutralize them with some other thought or action

     (4)  the person recognizes that the obsessional thoughts, impulses or images are a product of his or her own mind (not imposed from without as in thought insertion)

     Compulsions as defined by (1) and (2):

     (1)  repetitive behaviors (e.g., hand washing, ordering, checking) or mental acts (e.g., praying, counting, repeating words silently) that the person feels driven to perform in response to an obsession, or according to rules that must be applied rigidly

     (2)  the behaviors or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation; however, these behaviors or mental acts either are not connected in a realistic way with what they are designed to neutralize or prevent or are clearly excessive

B.  At some point during the course of the disorder, the person has recognized that the obsessions or compulsions are excessive or unreasonable. Note: This does not apply to children.

C.  The obsessions or compulsions cause marked distress, are time consuming (take more than on hour a day), or significantly interfere with the person’s normal routine, occupational (or academic) functioning, or usual social activities or relationships.

D.  If another Axis I disorder is present, the content of the obsessions or compulsions is not restricted to it (e.g., preoccupation with food in the presence of an Eating Disorder; hair pulling in the presence of Trichotillomania; concern with appearance in the presence of Body Dysmorphic Disorder; preoccupation with drugs in the presence of a Substance Use Disorder; preoccupation with having a serious illness in the presence of Hypochondriasis; preoccupation with sexual urges or fantasies in the presence of a Paraphilia; or guilty ruminations in the presence of Major Depressive Disorder).

E.  The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.

Specify if:
With Poor Insight: if, for most of the time during the current episode, the person does not recognize that the obsessions and compulsions are excessive or unreasonable.

Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.  Copyright 2000, American Psychiatric Association

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The benefits of OCD treatment are so great that exploring financial options to pay for it is worth the effort.  OCD rarely goes away by itself, and usually grows stronger without treatment.

Money concerns can certainly present challenges to getting OCD treatment.  If financial difficulties are keeping your adult child from seeking help to overcome OCD, it may be possible to find a method to reduce or finance the costs of treatment. Here are some ideas for how to pay for treatment or stretch limited dollars to get help.

Insurance

If your child is of an age that qualifies him or her as a dependent under your own health insurance policy, contact your insurance carrier to discuss coverage.

If your son or daughter carries his or her own health insurance, call the insurance company to find out:

• Which services are convered in the health plan?
• Is there a list of preferred therapists for CBT treatment of OCD?
• What percentage of charges will be covered?  Some insurance companies pay more if a treatment provider is in the company’s “network” of providers, and pays a lower percentage of fees if the provider is “out of network.”
• Does the policy have annual or lifetime limits for mental health services?

If your child is a college student, contact the student health center or counseling center at the college or university he or she attends.  Many colleges offer student health insurance, which may include coverage for mental health services at deeply-discounted rates, or free of charge. Some colleges and universities have on-staff psychologists who are trained to offer Cognitive Behavior Therapy.

Campus services also may be able to make referrals to psychologists in private practice who are trained and experienced in providing Cognitive Behavior Therapy.

If your adult child is a military veteran, mental health services may be available through some veterans' hospitals.  If your child qualifies, disability benefits may also be available through Social Security.  In addition, certain low-income individuals who cannot afford to pay for medical care can apply for benefits under Medicare or Medicaid.

Therapists

Some cognitive behavior therapists offer a sliding scale of fees, which are fees based upon one’s  ability to pay for services.  Your son or daughter should explain his or her financial situation clearly and, if necessary, try to work out a payment plan that extends over a period of time.  Of course, if you plan to pay for your child’s therapy, you’ll want to have this conversation with the therapist yourself.

Because the only effective, scientifically-supported therapy for OCD is CBT, sometimes in combination with prescription medication, it’s important not to waste time or money on unproven, ineffective therapies.  At this time, there is insufficient evidence to support the use of treatments such as hypnosis, herbal or homeopathic remedies, relaxation therapy, eye movement desensitization reprocessing (EMDR) or dietary changes.  And psychoanalysis and therapies that focus on family dynamics, early childhood trauma or issues of self-esteem are not effective treatments for OCD.  While certain forms of therapy, such as marriage and family counseling, can help with relationship problems and other difficulties that frequently accompany OCD, CBT and medication represent the cornerstone of treatment for OCD.

It’s important to note that meditation, yoga and exercise can complement formal treatment for OCD.  Many people find these tools to be extremely effective in helping reduce anxiety and facilitating the treatment process.

It’s also critical that any therapist you or your child contact be trained and experienced in Cognitive Behavior Therapy.  Keep looking if the therapist has never conducted CBT with patients.  When you contact a therapist about OCD treatment, asking the right questions can save you time and sometimes money.  Learn more questions to ask a prospective therapist.  An appropriate amount of “due diligence” in selecting a therapist will ultimately result in finding a qualified and experienced CBT therapist.

You may also want to contact your local mental health association for names of cognitive behavior therapists and for information regarding any kind of financial assistance that may be available for treatment.

Medications

If your son’s or daughter’s therapist recommends the use of OCD medication in conjunction with Cognitive Behavior Therapy, it may be possible to obtain drugs at a reduced price.  A number of resources offer information about prescription assistance, including:

• Partnership for Prescription Assistance Call 1-888-4PPA-NOW or Visit this site
• Needy Meds Visit this site

You can also try some of the following:

• Ask the prescribing doctor whether a generic form of the medication prescribed is available.  Generic drugs generally are less expensive than “name brand” medications.  For example, Prozac, a brand name medication, is far more expensive than fluoxetine, the generic form of the drug.
• Call various pharmacies to find the one that offers the medication at the lowest cost.
• Ask pharmacies if ordering a three-month supply would lower the cost.  Some insurance companies offer discounts on co-pays for prescriptions if the medications are ordered in 90-day supplies by mail or online.

Even though you want to save money, it’s very important to avoid ordering medications online from unknown sources.  Some web sites offer easy access to “doctors” who will write prescriptions that are filled by online “pharmacies.”  In some cases, junk email messages offer discounts on prescription medications, which are often filled in foreign countries.

The prices of drugs sold by some unknown sources may be attractive and far lower than those offered by local and reputable online pharmacies.  But there are many confirmed reports of online shoppers receiving fake medications.  In fact, when analyzed, some of these drugs were actually found to contain harmful substances including contaminated powders and, in one case, cement!  Obviously, you would never want your child to risk taking counterfeit medications.

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In order to help your adult child with OCD, it’s very important that you be aware of a special kind of therapy called Cognitive Behavior Therapy (CBT), which is the treatment of choice for all forms of OCD.  CBT makes use of two evidence-based techniques:  Exposure and Response Prevention therapy (ERP) and Cognitive Therapy (CT).  

Exposure and response prevention involves controlled, gradual exposures to the situations that trigger a person’s obsessions and compulsions.  Over time, the person learns to respond differently to these triggers, leading to a decrease in the frequency of compulsions and the intensity of obsessions.  OCD symptoms often become so mild that they’re easily ignored; sometimes they disappear.

ERP deliberately creates anxiety – for the purpose of getting better – but at a level the patient is ready to tolerate.  It takes courage to begin this type of therapy, but participants usually find that exposures are not as difficult as they had imagined.  And as their fears fade and they see success (frequently early in the process), they experience a boost in confidence that gives them the motivation they need to continue with more difficult exposures. 

The first step in ERP is for the person with OCD to provide the therapist with a detailed description of his or her obsessions and compulsions, which are then ranked from the least bothersome to the most difficult.  Beginning with easier symptoms, the therapist designs “exposures,” or challenges, that put the individual in situations that trigger obsessions.  During these exposures, the person avoids performing compulsive behaviors (“response prevention”) for increasingly longer periods of time.

Through repeated exposures, individuals with OCD realize that anxiety increases temporarily, peaks and then decreases when they avoid performing compulsions.

In cases where creating the actual situation that triggers a compulsion is impossible, therapists can use imagined exposures, visualizations and recordings that can effectively increase anxiety levels for ERP exercises.

When therapeutic exposures are repeated over time, the associated anxiety shrinks until it is barely noticeable or actually fades entirely.  The person then takes on more challenging exposures until they, too, become manageable.  Effective ERP leads to “habituation,” which means that people learn nothing bad happens when they stop performing compulsive rituals.

Cognitive Therapy, the second technique involved in CBT, helps an individual identify and modify patterns of thought that cause anxiety, distress or negative behavior.  In other words, CT helps patients understand that the brain is sending “error” messages.  Through Cognitive Therapy, the person learns to recognize these errors and confront the obsessions by responding to them in new ways.

For example, a new mother may have the thought, “Could I possibly harm my baby with a knife?”  Most people would easily dismiss this thought with something like “That’s a strange thought; where did that come from?”  But some people hold fast to certain beliefs, such as the belief that thoughts are always important, or that having a thought is morally equivalent to actually doing it.  Therefore, a mother with OCD may react to the thought of harming her baby by thinking “I’m a horrible mother for having such a thought! What’s wrong with me to think like that?”  Research shows that attempting to control your thoughts – or believing you should be able to control them – actually leads to more horrific images and frightening or repugnant thoughts.

Using Cognitive Therapy, the mother with OCD might be asked to challenge her thoughts and taught more suitable alternatives to her current ways of thinking: “I’ve been around many babies before, and I have never hurt any of them.”  Strategies such as self-talk, learning to separate oneself from the disorder, and analyzing the realistic chances or probability of a catastrophe's occurrence are also part of Cognitive Therapy.

Most CBT treatment is conducted on an outpatient basis once a week with “homework” consisting of daily exposures to be completed between therapy sessions.  In severe cases, people may require more frequent sessions or even residential treatment. 

This treatment may seem unusual; you may even think it wouldn’t work.  Or perhaps your son or daughter has already tried to resist compulsions, without much success.  But with the right therapist and sufficient time and support, Cognitive Behavior Therapy has helped thousands of people control their OCD.  In fact, some studies show that more than 85 percent of the people who complete a course of CBT experience a significant reduction in OCD symptoms.

CBT is the only form of behavior therapy strongly supported by research for the treatment of OCD.  Therefore, it’s extremely important to find a trained cognitive behavior therapist experienced in treating OCD – usually a psychologist with a Ph.D., Psy.D., M.A. or M.S. degree, or a specially trained social worker.  Beyond OCD can help you find a treatment provider.

Imagining life with more free time and without crippling anxiety helps many people with OCD stay motivated to stick with ERP until the end of treatment.  Following therapy, your adult child can look forward to returning to work or finding a better job, restarting an active social life, or taking up new hobbies to fill the hours that used to be consumed by obsessions and compulsions.

Metacognitive Therapy

With Metacognitive Therapy (MCT), people are taught to ignore their intrusive thoughts by learning to emotionally detach from the obsession and to observe the obsession without judgment.  MCT focuses upon changing a person’s perception of the significance of experiencing intrusive thoughts and the perceived need to react to those intrusive thoughts.  Recent preliminary studies support the use of MCT, but additional research must be conducted to support it as an effective and time-efficient treatment for OCD.

Read personal stories of CBT success

Find a treatment provider

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People who have OCD didn’t do something to cause it.  And it’s important to know that parents don’t cause a child’s OCD, either.  It isn’t caused by the way parents talk with their children or don’t talk with them.  It’s not caused by how children are disciplined or not disciplined or how they were toilet-trained.  It doesn’t matter if both parents work, if mom is a stay-at-home mom or if the parents are divorced or remarry.  Even the worst parenting in the world doesn’t cause OCD.  OCD is a neurobiological disorder, not a condition that is caused by action or inaction.

However, if a person is genetically predisposed to OCD or has a subclinical case of OCD, a stress “trigger” or trauma may precipitate symptoms.  For someone who already has OCD, stress or a transition may worsen symptoms.

Here are some common misperceptions about the cause of OCD:

• STRESS. Stress doesn’t cause OCD, although symptoms sometimes begin after a severe trauma, such as the death of a loved one.  Other stress triggers include the birth of a sibling, a marriage or divorce, a move to a new home or new community, a transition to a new school or new school year, or even a natural disaster, such as an earthquake or tornado.  And if OCD symptoms are already present, stress can worsen those symptoms.  Anxiety, fatigue and illness – even the stress associated with positive events, such as holidays and vacations – can affect OCD.
• ILLNESS. Childhood illnesses do not cause OCD, although there is growing evidence that severe bacterial or viral infections such as strep throat or the flu may trigger the sudden onset of symptoms in children who are genetically predisposed to OCD.
• PARENTING. As previously indicated, there is no evidence that the way parents guide or discipline their children causes OCD.  Parents should not be blamed when a child exhibits symptoms of this disorder.
• FAMILY ACCOMMODATIONS. Although family problems don't cause OCD, families may unintentionally have an impact on the maintenance of OCD symptoms.  To decrease the distress a person with OCD experiences, parents and other family members frequently accommodate OCD behaviors.  For example, they may provide verbal reassurance when the person requests it, conduct rituals with or for the person or provide items he or she needs to carry out rituals, such as soap for hand washing.  Although they usually mean well, family members may actually be enabling the individual with OCD, and symptoms worsen, rather than improve.  OCD symptoms may also worsen if family members react to a person’s rituals with criticism or hostility.  Parents and other family members need to develop special skills to help their loved one overcome and manage the disorder.

Beyond OCD ’s guide, How to Help Your Child, is a good source of advice, and Beyond OCD can help parents find effective treatment for their child.

Order or download How to Help Your Child

Back to What Causes OCD

What doesn’t cause OCD

Everyone experiences intrusive, random and strange thoughts.  Most people are able to dismiss them from consciousness and move on.  But these random thoughts get “stuck” in the brains of individuals with OCD; they’re like the brain’s junk mail.  Most people have a spam filter and can simply ignore incoming junk mail.  But having OCD is like having a spam filter that has stopped working – the junk mail just keeps coming, and it won’t stop.  Soon, the amount of junk mail exceeds the important mail, and the person with OCD becomes overwhelmed.  So why does the brain of individuals with OCD work this way? In other words, what causes OCD?

Using neuroimaging technologies in which pictures of the brain and its functioning are taken, researchers have been able to demonstrate that certain areas of the brain function differently in people with OCD compared with those who don’t.  Research findings suggest that OCD symptoms may involve communication errors among different parts of the brain, including the orbitofrontal cortex, the anterior cingulate cortex (both in the front of the brain), the striatum, and the thalamus (deeper parts of the brain).  Abnormalities in neurotransmitter systems – chemicals such serotonin, dopamine, glutamate (and possibly others) that send messages between brain cells – are also involved in the disorder.

Although it has been established that OCD has a neurobiological basis, research has been unable to point to any definitive cause or causes of OCD.  It is believed that OCD likely is the result of a combination of neurobiological, genetic, behavioral, cognitive, and environmental factors that trigger the disorder in a specific individual at a particular point in time.  Following is a discussion of how those factors may play a role in the onset of OCD.

A study funded by the National Institutes of Health examined DNA, and the results suggest that OCD and certain related psychiatric disorders may be associated with an uncommon mutation of the human serotonin transporter gene (hSERT).  People with severe OCD symptoms may have a second variation in the same gene.  Other research points to a possible genetic component, as well.  About 25% of OCD sufferers have an immediate family member with the disorder.  In addition, twin studies have indicated that if one twin has OCD, the other is more likely to have OCD when the twins are identical, rather than fraternal.  Overall, studies of twins with OCD estimate that genetics contributes approximately 45-65% of the risk for developing the disorder.

A number of other factors may play a role in the onset of OCD, including behavioral, cognitive, and environmental factors.  Learning theorists, for example, suggest that behavioral conditioning may contribute to the development and maintenance of obsessions and compulsions.  More specifically, they believe that compulsions are actually learned responses that help an individual reduce or prevent anxiety or discomfort associated with obsessions or urges.  An individual who experiences an intrusive obsession regarding germs, for example, may engage in hand washing to reduce the anxiety triggered by the obsession.  Because this washing ritual temporarily reduces the anxiety, the probability that the individual will engage in hand washing when a contamination fear occurs in the future is increased.  As a result, compulsive behavior not only persists but actually becomes excessive.

Many cognitive theorists believe that individuals with OCD have faulty or dysfunctional beliefs, and that it is their misinterpretation of intrusive thoughts that leads to the creation of obsessions and compulsions.  According to the cognitive model of OCD, everyone experiences intrusive thoughts.  People with OCD, however, misinterpret these thoughts as being very important, personally significant, revealing about one’s character, or having catastrophic consequences.  The repeated misinterpretation of intrusive thoughts leads to the development of obsessions.  Because the obsessions are so distressing, the individual engages in compulsive behavior to try to resist, block, or neutralize them.

The Obsessive-Compulsive Cognitions Working Group, an international group of researchers who have proposed that the onset and maintenance of OCD are associated with maladaptive interpretations of cognitive intrusions, has identified six types of dysfunctional beliefs associated with OCD:

1. Inflated responsibility: a belief that one has the ability to cause and/or is responsible for preventing negative outcomes;

2. Overimportance of thoughts (also known as thought-action fusion): the belief that having a bad thought can influence the probability of the occurrence of a negative event or that having a bad thought (e.g., about doing something) is morally equivalent to actually doing it;

3. Control of thoughts: A belief that it is both essential and possible to have total control over one’s own thoughts;

4. Overestimation of threat: a belief that negative events are very probable and that they will be particularly bad;

5. Perfectionism: a belief that one cannot make mistakes and that imperfection is unacceptable; and

6. Intolerance for uncertainty: a belief that it is essential and possible to know, without a doubt, that negative events won’t happen.

Environmental factors may also contribute to the onset of OCD.  For example, traumatic brain injuries have been associated with the onset of OCD, which provides further evidence of a connection between brain function impairment and OCD.  And some children begin to exhibit symptoms after a severe infection such as strep throat.  Studies suggest the infection doesn’t actually cause OCD, but triggers symptoms in children who are genetically predisposed to the disorder.

Parenting styles and stress are environmental factors that have been blamed for causing OCD.  But it's important for you to know that no research has ever shown that the manner in which parents raised their child causes OCD.  Stress can, however, be a factor in triggering OCD in someone who is predisposed to it, and OCD symptoms can worsen in times of severe stress.

In sum, although the definitive cause or causes of OCD have not yet been identified, research continually produces new evidence that hopefully will lead to more answers.  It is likely, however, that a delicate interplay between various risk factors over time is responsible for the onset and maintenance of OCD.

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Just For Teens

If you’ve been diagnosed with Obsessive Compulsive Disorder (OCD) – or you think you might have OCD – this section is for you.

To the Point: You Have OCD.  Now What?

Having Obsessive Compulsive Disorder isn’t the end of the world.  Obviously, you’d rather not have it.  But just like other medical conditions such as diabetes and asthma, there is a treatment for OCD.  You will be able to live with OCD and manage its symptoms.  Just give yourself a little time to learn about this disorder and get the right “tools” to keep it under control.

It’s Unfair

Yes, you probably feel that OCD is unfair.  It’s unfair that you have Obsessive Compulsive Disorder, and it’s unfair that it makes you feel bad.  It’s unfair that it can make you feel and act differently from everyone else.  But getting down about it isn’t going to help you get better.  Getting the right treatment can.  And no matter how much your parents want to help you, you’re really the one person who can make yourself better – with the right treatment.

What Is OCD?

OCD is a neurobiological anxiety disorder.  This means that OCD has to do with the way the brain functions.  Scientists have found that certain areas of the brain work differently in people who have OCD compared to those who don’t.  You’re not “crazy.” You didn’t do anything to cause OCD.  You’re not alone. And your parents didn’t cause it either, even if you really hate a lot of the things they do!

If you don’t already know this, with OCD, fears, worries and bad thoughts (sometimes they’re really disturbing) pop into your head and just won’t go away. These are obsessions.  Or once in a while, you may have certain uncomfortable urges or feelings that make you feel like you have to do something “just right” or “just so.”  What you do to try to make yourself feel better – like washing your hands over and over or redoing your homework until you run out of time and it’s not finished – those are called compulsions.  Sometimes they’re called rituals.  Unfortunately, the more you do these rituals to make yourself feel better, the more you have to keep doing them.  They may make you feel better for a little while, but the obsessions just keep coming back.  And you may feel like you’re doing compulsions all the time.

We have to say it again...You’re not “crazy.”  You didn’t do anything to cause OCD.  And you’re not alone.

Many people with OCD have above-average intelligence.  And you’ll find that people with OCD come from all races, ages, and ethnic backgrounds.  OCD affects both males and females, too.  In the United States, about 1 in 40 adults and 1 in 100 kids have OCD.

Some TV shows and movies feature stars who supposedly have OCD, and sometimes these characters are played for laughs.  As you already know, OCD is a lot different in real life.  And it definitely isn’t funny.

Before you go any further, there’s one important thing you need to know.  OCD won’t go away by itself.  And without treatment, it’s likely to get worse.  That’s not a scare tactic.  It’s the truth.  That’s why when you’re tempted to say to everyone (including your parents) “JUST LEAVE ME ALONE!” it’s really important that you take a deep breath and, if you haven’t already started treatment, ask your parents to help you find a cognitive behavior therapist.  There’s more later in this section about finding a therapist and about how Cognitive Behavior Therapy (CBT) works.

Learn more about what OCD is and about obsessions and compulsions

How Can I Get Over OCD?

You need Cognitive Behavior Therapy to get relief from OCD.  This therapy is different from what you might expect – it’s not “analysis” with a lot of talking about your past.  And it’s not something weird like “relaxation techniques,” diet plans or herbal remedies.  It’s about giving you the practical tools you’ll need to outwit OCD.  A specially trained cognitive behavior therapist teaches you to use what is called Exposure and Response Prevention (ERP) tactics.

Learn more about CBT and ERP

Managing Your Parents and the Others at Home

Parents always think they’re helping, but they can make you feel worse when they don’t know what to do, or are constantly telling you what to do.  You can help manage the situation at home by not losing your temper when they nag.  It can be really hard to do, but try to remember that they’re only trying to help because they care about you.  It’s also important to remember that although you’re the one with OCD, others are affected by the OCD, too.

Brothers, sisters, aunts, uncles, cousins and grandparents – your home might include any number of these family members.  It might seem like all they ever say is “Just stop it!”  Funny, isn’t it?  If you could just stop it, you’d be the first one to do it.  No one on the planet would have to tell you to stop!  

Sometimes family members try to help by doing your rituals with you or for you.  The problem is that helping you with your rituals isn’t helping you get over OCD.  It’s really up to YOU to manage the problem.

A well-known professional in the treatment of OCD has written an article called “How To Manage Your Parents When You Have OCD: A Guide for Teens.”  He gives practical ideas to help you live with the ups and downs of OCD.  One part of the article that’s especially good is where he describes common mistakes parents and other family members can make when trying to help you.  It’s a good read.

You can show this article to your parents.  Maybe they’ll pick up some pointers about what to do – and what NOT to do – while you’re trying to get over your OCD.

Read the article: How To Manage Your Parents When You Have OCD

You can also check out two good books titled “Breaking Free From OCD: A CBT Guide for Young People and Their Families” and “Obsessive-Compulsive Disorder – the Ultimate Teen Guide.”

How Do I Know I’ll Get Better?

Wondering if CBT will really give you relief from OCD is understandable.  Many thousands of teens, adults and children have committed to doing CBT therapy (which includes homework sessions between sessions with your therapist) and gained control over their OCD.

It’s not easy to beat OCD.  It will take hard work on your part.  You’ll need to be open to trying CBT and be honest with the cognitive behavior therapist you’re working with.  You also have to commit to going to therapy sessions once a week or more and doing homework assignments between sessions.

In some cases, your therapist may recommend prescription medication for a while if you’re feeling depressed (and OCD certainly can make you feel depressed) or to help ease your anxiety and fears.  This can make it much easier to do your CBT work. But the medication may just be needed for the short-term.  And you have to have some patience – with yourself and with your family – as you go through treatment.

You can read personal accounts of how teens and adults have learned to manage their OCD.  Their stories are in the Personal Stories section of this web site.

Read Personal Stories of success overcoming OCD

Everyone Thinks I’m Different -- “The One With OCD”

You ARE different.  EVERYONE is different.  That’s what makes the world interesting – everybody has different skills, different interests and very different personalities.  If you think of all your good traits, you might be surprised at how long the list is.  (Or you can get down on yourself and only think about the negative things, which we don’t recommend!)

OCD may seem to be overwhelming right now.  The thoughts and fears are unwanted, and are sometimes almost too much to bear.  No one should underestimate the pain you feel because of OCD.  Obsessions and compulsions can take up a lot of your time, too, especially if you haven’t started CBT treatment yet.

But OCD isn’t YOU.  You are a person who just happens to have a medical illness called OCD, just like some kids have allergies or asthma.  But you just want OCD to stop being such a big part of your life.  That’s why you need to get CBT treatment. You can learn to manage your symptoms, and feel more like yourself again.  Remember, you have OCD, but don’t let OCD have YOU!!

Will I Ever Get “Back to Normal”?

No one can tell you how quickly you’ll get relief from OCD when you’re undergoing CBT therapy.  We’re not talking about a lifetime of treatment; in fact, it might only take a couple of months if you make the commitment to work hard at therapy.  (If you’ve had OCD symptoms for a long time, it may take somewhat longer to learn to manage the symptoms.)  You can talk about timing with your therapist.  He or she has experience working with teens and may have some insight about how long you’ll be in therapy, and what to expect when treatment is completed.

Once you get control over your OCD symptoms, you can get back to concentrating on school work, friends and family, music, hobbies, sports – whatever matters most to you.

Remember, OCD is not your fault, and no one wants you to suffer with this stressful disorder.  You have the power to keep OCD under control, with a little help from those who love you and your therapist.

 

Read “Got OCD? A Guide for Teens”

Read books about Teen OCD

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OCD is not a new disorder.  But years ago, much less was known about it than is known today.  There were no consumer books written about OCD until the late 1980s.  Until relatively recently, information was not readily available on the Internet.  And just decades ago, research on OCD was virtually nonexistent.  As a result, few tools were available to help professionals understand OCD – or to help struggling parents make sense of their child’s unusual behavior and treat it appropriately.  If your adult child developed OCD when he or she was young, there is a strong possibility that it was misdiagnosed at the time.  Even today, many physicians and other health professionals do not recognize the symptoms of OCD in young people.

In the past, the stigma of having a child with a mental illness also caused many families to hide the truth for fear of gossip, discrimination and shame; many never even asked their family physician for help.  And for many families, access to mental health services was very limited.

Due to these factors, experts now believe that while OCD was present in children (and adults) in the past, the number of OCD cases was very much underreported, giving the impression that OCD is a “new” disease today.

Back to Helping An Adult Child Who Has OCD

Helping An Adult Child Who Has OCD

Parents are not to blame for their child’s OCD.  It is a neurobiological disorder.

OCD is an anxiety disorder, which, like all anxiety disorders, is neurobiological in nature.  It equally affects men, women and children of all races, ethnicities and socioeconomic backgrounds.  If your adult child has OCD, or if you believe he or she has OCD, you are one of millions of parents who know the heartbreak of this frequently debilitating illness.

In the United States, about 1 in 40 adults and 1 in 100 children have OCD.  And according to the World Health Organization, OCD is one of the top 20 causes of illness-related disability, worldwide, for individuals between 15 and 44 years of age. 

These estimates lead many to wonder how OCD could grow from what was once a relatively “rare” condition to one of such large proportions today.

Learn more about why OCD seems to be a relatively “new” diagnosis

What Causes OCD?

OCD is an anxiety disorder, which, like all anxiety disorders, is neurobiological in nature.  Although the precise cause of this disorder is not completely understood, researchers have found that functioning in certain areas of the brain is different in individuals who have OCD compared to those who don't.  Abnormalities in neurotransmitters -- the chemical systems that send messages between brain cells -- have also been found.  In addition, research has indicated that genetic, behavioral, cognitive, and environmental factors may also play a role in the onset of OCD.

As a parent, it’s natural to wonder if something in your parenting style may have triggered the onset of OCD symptoms in your child.  But the manner in which you raised your child did not cause his or her OCD.  Although stress can aggravate OCD symptoms, even the worst parenting doesn’t cause OCD.

Learn more about what causes OCD

While it's important for parents to understand what causes OCD, it's just as important that you understand what doesn't cause OCD.

Learn more about what doesn't cause OCD

Getting Treatment

Fortunately, effective treatment is available today to help people who suffer from OCD. Cognitive Behavior Therapy (CBT), sometimes accompanied by medication, is the most effective evidence-based behavioral treatment for OCD.  It’s not a cure; there currently is no cure for OCD.  But CBT can result in  dramatically-reduced symptoms and, in some cases, relief from virtually all symptoms.

Learn more about Cognitive Behavior Therapy

Knowledge is Empowering

It’s never too late to start helping the adult child you love get relief from OCD.

We encourage you to read everything in the OCD Facts and Individuals sections of this web site.  Knowledge is a powerful tool in the fight against OCD.  The information in these sections includes:

• What OCD is (and what is not OCD)
• Who is affected by OCD
• What causes OCD (and what doesn’t cause OCD)
• OCD symptoms -- common obsessions and compulsions
• A self-screening test for OCD
• Related conditions that may be confused with OCD, or are related to OCD
• What kind of treatment is available
• How to choose a therapist
• Treatment challenges
• Medication information
• Recovery avoidance
• Links to more resources, including other web sites, books and support groups

As a parent, you can take several very important steps toward helping your son or daughter find relief from OCD:

• Learn about OCD -- learning about this disorder will help you understand the impact of OCD and what your son or daughter is going through.  It will also put you in a position to provide your child vital information about the illness and how to get appropriate treatment.
• Refer them to this web site -- provide your son or daughter with the link to this web site: www.beyondocd.org to help him or her access a wealth of information.  Alternatively, it may be helpful for you to show this site to your child on your computer, his or her computer or a computer at a library.
• Download a copy of our guide Relief from OCD - A Guide for People with Obsessive Compulsive Disorder.  You can also contact us at the link below to request a printed guide to give to your son or daughter.
• Strongly encourage your child to get treatment -- being supportive also means urging him or her to get help and commit to treatment, which includes completing “homework” between Cognitive Behavior Therapy sessions.
• Bargain if you have to.  Some people balk at going to therapy or doing their assigned exercises at home.  Despite your best intentions, you may find your encouragement being ignored and you may even end up in an argument.  If your adult child refuses to go to therapy or do homework exercises, you may have to resort to “bargaining.”  It’s essentially like providing an incentive or reward for participating in therapy.  Consider rewarding your child with something he or she particularly likes -- IF he or she goes to therapy and does all required assignments at home.  You could try it week by week. The reward should be something that is especially appealing to your child: a new article of clothing, a new music CD, a gift card, or even a special dessert.  Be creative.  A number of parents have reported good success with this approach. And remember, YOUR reward will be your child’s success in therapy and overcoming OCD.
• Stop enabling your child’s OCD -- a trained therapist can help you learn how to stop reinforcing OCD by accommodating compulsive behavior or participating in your child’s rituals.

Affordability

The expenses associated with OCD treatment may be financially challenging.  If your adult child cannot afford to get treatment, you may be called upon to help with the cost.

If you're concerned about being able to afford treatment, you may need to look for ways to reduce costs.  Fortunately, effective treatment usually isn't a long-term expense.  If your child commits to working hard with a therapist and doing the prescribed homework by the therapist between treatment sessions, significant improvement can generally occur in a matter of months.

The benefits of treating OCD outweigh most short-term financial challenges. Without treatment, individuals with OCD rarely get better on their own; the disorder simply doesn’t work that way.  In fact, left untreated, it frequently gets worse.

Learn more about ways to help pay for OCD treatment.

Click here for OCD Facts

Click here for Information for Individuals

Download (or order) a copy of Relief from OCD

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Don’t blame yourself for your child’s OCD. Even the worst parenting doesn’t cause this disorder.

If your child has Obsessive Compulsive Disorder, or is exhibiting symptoms that could be OCD, he or she is not alone. Current estimates suggest that one in 100 children has OCD, which means that millions of children worldwide are suffering with this disorder.  When you include parents, other family members, friends, and school personnel who are affected by a child with OCD, this unwanted condition has an impact on many millions more.

OCD is not a “phase” your child is going through.  And your son or daughter isn’t deliberately misbehaving or trying to get attention.  Your child is not to blame.  Perhaps most importantly, it’s not your fault that your child has OCD.  OCD is a neurobiological disorder, which means that the brain of a child with OCD functions differently than the brain of child who does not have OCD.

Beyond OCD wants to help you get the information you need to help.  You and your child deserve to get relief from an illness that is affecting the pleasures of childhood, normal family life, friendships and schoolwork.  Fortunately, effective treatment is available, and you can look forward to the future with optimism.  With proper treatment, your child can learn to manage the symptoms of OCD.

As a parent, you are in a powerful position to help your child by:

• understanding OCD – what it is, what it is not, causes and myths
• finding the right therapist to provide treatment
• learning how to recognize and respond to symptoms

Just for Teens Special information for teenagers about OCD

What Is OCD?

OCD is an anxiety disorder, which, like all anxiety disorders, has a neurobiological basis. This brain condition affects how children (and adults) think.  It is characterized by obsessions and compulsions that take up at least an hour a day.  For many people, however, obsessions and compulsions consume several hours a day.  Obsessions are involuntary intrusive thoughts, images or impulses that cause unbearable worry, fear or discomfort.  To cope with the obsessions, the OCD sufferer devises processes or actions called compulsions, or rituals.  In some cases, rituals are observable: a child washes his or her hands excessively or checks locks for extensive periods of time.  In other cases, compulsions may be completed mentally and cannot be detected by an outside observer: the child is saying a prayer mentally to prevent something terrible from happening.  These repetitive, ritualistic acts make a child feel better, but the relief is only temporary.  

Currently, there is no cure for OCD; it’s a chronic condition.  However, much like the child with asthma, allergies or diabetes learns how to manage his or her condition with proper treatment, a child with OCD can learn how to manage the symptoms of OCD.

Learn more about What is OCD

Learn to Recognize OCD Symptoms

Children sometimes describe their obsessions as “bad thoughts” or fears or worries.  And in some cases, they have a very hard time describing or putting into words what it is that is bothering them.  But they feel compelled to engage in rituals that help to reduce their anxiety or discomfort – albeit temporarily.

As an example, a child may have an intense, recurring fear of someone breaking into the house and harming someone in the family.  This fear is the obsession.  The child may insist on repeatedly checking that the doors and windows are locked at bedtime, or ask the parents to check other areas over and over again.  Those repetitive acts are compulsions, or rituals.  While safety fears are not uncommon in children, persistent and escalating fears about these matters can be very upsetting, causing a child great distress.  

Another common obsession is a fear of germs, which is frequently followed by compulsive hand washing – hand washing that occurs so often or takes up so much time that the child’s skin is raw.

Although fears of harm and germs, washing, and checking are very common symptoms of OCD in children, OCD may manifest in countless ways.  In some cases, children experience uncomfortable feelings or urges that something has to be “just right” or “just so,” rather than discrete obsessions.  So your child may feel compelled to put a sock on over and over again until it “feels right.”

As a parent, it’s critical that you be able to recognize the symptoms of OCD as a first step toward helping your child gain relief.  Learn more about the varied symptoms of OCD in children and teens

What Causes OCD?

It’s natural for parents to look for the cause of OCD when they see their child suffering from this disorder.  Parents often blame themselves, or wonder what they did “wrong” to cause this often heartbreaking problem.  Unfortunately, family members, neighbors or friends may reinforce this concern.  But parenting is not to blame.  Learn more about what causes OCD

Who Is Affected By OCD?

Millions of people around the world have OCD.  In the U.S., current estimates are that approximately 1 in 40 adults and 1 in 100 children suffer with this potentially debilitating disorder.  Learn more about who is affected by OCD

How Is OCD Diagnosed?

No laboratory test can identify OCD, but a mental health professional who is knowledgeable about this disorder can conduct a specific type of interview and gather other information to determine whether a child has OCD.  Learn more about OCD diagnosis

What Other Conditions Might Coexist with My Child’s OCD?

A number of other mental health disorders frequently occur with OCD.  In fact, it is the rule, rather than the exception, that your child will have at least one other coexisting disorder.  A trained mental health professional can diagnose and provide appropriate treatment for these conditions as well as OCD.  These disorders include:

• Mood Disorders (Depression and Bipolar Disorder)
• Anxiety Disorders
• Attention-Deficit/Hyperactivity Disorder
• Eating Disorders
• Autism Spectrum Disorders

Some conditions that coexist with OCD are referred to as Obsessive-Compulsive Spectrum Disorders because they share many similarities with OCD, such as repetitive thoughts and behavior, similar brain activity, and similar responses to certain treatments.  Although experts are not in complete agreement as to which disorders are included in the Obsessive Compulsive Spectrum, many professionals include the following:

• Tourette Syndrome or Tic Disorders
• Body Dysmorphic Disorder
• Trichotillomania, Skin-Picking and Nail Biting

Learn more about disorders that frequently coexist with OCD

What Treatment is Effective for OCD?

While there is no cure for OCD, getting relief from OCD is possible with Cognitive Behavior Therapy (CBT), sometimes in combination with medication. CBT has received broad scientific support as the most effective behavioral treatment for OCD. It is recommended by nationally-recognized institutions such as the American Academy for Child and Adolescent Psychiatry, National Institutes of Mental Health, Mayo Clinic and Harvard Medical School.  Learn more about Cognitive Behavior Therapy

How Can I Find the Right Therapist?

It’s important to talk with your doctor if you believe your child has OCD.  Ask for a referral to a cognitive behavioral therapist who is experienced in treating children or teens with OCD.  The personnel at your child’s school may also have some suggestions.  Beyond OCD can help you locate professionals who work with young people and are trained in CBT, as well.  Learn more about choosing a therapist

OCD Medication for Children

Medication can play an important role in treating children who have OCD.  It’s not recommended by experts as the first line of treatment for OCD, but in some cases, your child may need both Cognitive Behavior Therapy and medication to gain relief. A doctor may prescribe medication, for example, for a child who has moderate to severe OCD or OCD with coexisting depression.  In many cases, medications are used on a temporary basis until he or she is able to manage the disorder with therapy alone.  Once the child is better able to handle anxiety and stress during CBT, or his or her level of depression has been reduced, medication may be gradually decreased; in some cases, it can be eliminated.

The decision to use drugs as a tool in the treatment of childhood or adolescent OCD depends on many factors including:

• your child’s age, types of obsessions and compulsions and the severity of OCD symptoms;
• the presence and severity of other disorders, such as depression, attention-deficit/ hyperactivity disorder, other anxiety disorders or OC spectrum disorders;
• your child’s personality and willingness to undergo treatment and perform CBT homework assignments;
• access to Cognitive Behavior Therapy; and
• previous experience with CBT.

Parents should learn as much as possible about medications; if drugs are prescribed, you’ll understand the benefits and cautions of this kind of treatment.  Learn more about OCD Medications

Treatment Challenges

Being knowledgeable about OCD is a powerful tool that’s linked to success in treating this disorder.  Understanding barriers to treatment and knowing what to expect ahead of time are extremely important to the success of your child’s treatment.  Find out more about treatment challenges

The Parents’ Role in OCD Treatment and Recovery

Parents play a crucial role in helping their children get relief from OCD.  From initially noticing that something is wrong with their child through treatment and beyond, parents can help –  or hinder – a child’s progress in getting and maintaining relief from OCD.  Learn more about how parents can help their children who suffer with OCD

OCD At School

Symptoms of OCD may be obvious at school.  But even if your child hides his or her OCD during school hours, the disorder may be negatively affecting him or her academically, socially, emotionally, or behaviorally.  The decision about whether to tell your child’s teachers about OCD is a personal one.  But it’s important to know that there are benefits to informing school personnel about your son’s or daughter’s OCD. You’ll need to weigh the benefits of openness against privacy and other concerns.

Also keep in mind that teachers may be informed to a greater or lesser extent about what OCD is and  how they can help your child function in the school setting.  You may need to play an active role in educating school personnel about OCD or finding other resources (e.g., books, films, web sites, guest speakers) to help them learn about OCD.  This web site contains numerous sources to help you in this regard.

Your child may also be eligible for accommodations or special education and related services under various federal laws that pertain to children with disabilities.  Learn more about OCD at school

Help Your Teen Child Overcome OCD

Your adolescent with OCD may test your patience as he or she struggles with OCD.  Symptoms of this disorder may be causing him or her great distress, yet he or she may be unwilling to admit that outside help is necessary.  It’s important to know that teens can – and must – be active participants in recovery from OCD.  They have to be willing to engage in Cognitive Behavior Therapy and recognize it as something that can help them overcome OCD rather than as one more thing their parents are telling them to do!

We’ve created a special section that you can share with your teen, to help him or her learn about OCD, its treatment, and his or her power to help themselves.

Preview the section before you show it to your teen

Affordability

The expenses associated with OCD treatment may be financially challenging.  If you’re concerned about being able to afford treatment, you may need to look for ways to reduce costs.  Fortunately, effective treatment usually isn’t a long-term expense.  If your child commits to working hard with a therapist and doing the prescribed homework between treatment sessions, significant improvement can generally occur in a matter of months.

The benefits of treating OCD outweigh most short-term financial challenges.  Without treatment, individuals with OCD rarely get better on their own; the disorder simply doesn’t work that way.  In fact, left untreated, it frequently gets worse.  Learn more about ways to help pay for OCD treatment.

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Learn About OCD

To provide the best support possible to your friend, you will need to better understand what he or she goes through with this frequently debilitating disorder. We recommend you visit the OCD Facts, Individuals, or Parents section of this web site for more information about:

• Who is affected by OCD
• What OCD is (and what OCD isn’t)
• What causes OCD (and what doesn’t cause it)
• What OCD symptoms are -- obsessions and compulsions, with examples
• What related conditions may complicate OCD or exist with OCD
• What kind of treatment is recommended
• Treatment challenges, resistance and recovery avoidance
• Medication information

You can access the OCD Facts, Individuals and Parents sections through the Home page of this web site, or through these links:

• Go to OCD Facts section
• Go to Individuals section

Other Ways to Support Your Friend

Here are some other ways in which you can support a friend with OCD:

(1) Keep in mind that your support is very important in your friend’s fight against OCD.  As difficult as it may be at times, try to remain as positive as possible and refrain from scolding or negative remarks.  Research has indicated that negative emotions such as criticism and hostility may actually worsen OCD symptoms and interfere with treatment.  Also remember to avoid asking your friend “Why don’t you just stop it?”  If your friend could just stop the OCD behavior at will, he or she would have been the first one on the face of the earth to have stopped it!  And if your friend’s family members are also trying to help, talk with them to make sure you are all on the same “wavelength” with regard to the way you respond to OCD behavior.

(2) It’s very important to gather up the courage to stop participating in your friend’s rituals or avoidance behaviors.  Maybe you’ve found yourself doing some of the following to try to help your friend:

• Getting involved in rituals by checking door locks, helping decontaminate clothing, food or even entire rooms;
• Providing constant reassurances when he or she seeks reassurance about something;
• Giving or buying him or her items needed to carry out rituals, such as soap for hand washing;
• Allowing/helping your friend avoid certain stimuli that trigger OCD symptoms, triggers, such as taking a longer route to a destination to avoid a feared location;
• Tolerating delays associated with ritual completion, such as waiting in the car to drive to school while your friend completes a washing ritual in the house; or
• Trying to have rational conversations or debates with him or her about the OCD behavior.

If you’ve found yourself doing any of the above, you’ve probably learned by now that none of this will actually make OCD stop.  In fact, participating in OCD rituals actually allows or enables them to persist and even become stronger. 

It’s important to talk with and remind your friend that participating in the rituals may make him or her feel better temporarily, but that it doesn’t help decrease the symptoms in the long term.  In fact, it makes the symptoms worse. 

Discuss with your friend the ways you’ve been accommodating the OCD and how important it is to work together as you start to decrease your participation in rituals.  Try to help your friend understand that you’re doing this because you care about and want to support him or her.  You’re not doing this to be mean or spiteful; you want him or her to overcome OCD. 

(3) If your friend isn’t already in treatment, you can be supportive by encouraging him or her to get treatment.  That doesn’t involve nagging; let him or her know you want what’s best for him or her.  And Cognitive Behavior Therapy (CBT) – sometimes accompanied by medication – is the only known treatment that is effective in helping people gain control over OCD.  If your friend is refusing treatment, there are a number of ways you can support him or her.  Learn more about what to do if your friend refuses treatment.

(4) When your friend is undergoing CBT, he or she will be facing his or her fears and experiencing increased anxiety levels.  It’s normal for him or her to go through many emotional ups and downs: hopefulness and feelings of success at times, as well as frustration, exhaustion, feelings of failure and a desire to give up at other times.  And if your friend is on medication, he or she may also experience some unpleasant side effects initially.  It’s only natural that you, as a friend, will be affected by this roller coaster of emotions.

(5) There may be times when your friend is struggling with CBT sessions or homework and may want to give up.  You can help by encouraging him or her to persevere with CBT and letting him or her know that you have faith in his or her ability to succeed.  Remind your friend how difficult this work is, and always praise him or her for effort – even when he or she isn’t successful.

(6) Some people have found it helpful to use humor, whenever appropriate.  In some cases, seeing the humor – if not absurdity – in some of the OCD symptoms may help your friend become more detached from the disorder.  It’s extremely important, though, to use your best judgment as to when to use humor.  Remember that a situation is funny only if your friend finds it funny, as well.  Needless to say, inappropriately laughing at or mocking OCD behavior can be very harmful.

(7) Even after treatment, relapses – or reoccurrences of OCD symptoms – can and do happen.  It may be frustrating to you, but it can be downright frightening for your friend.  Relapses in people who have been treated successfully for OCD are common, and  “booster” sessions of Cognitive Behavior Therapy are a customary part of the treatment and recovery process.  You can help your friend by remaining positive, reiterating that many people who’ve been treated for OCD experience relapses and encouraging him or her to seek the necessary help. 

(8) It can be easy for you to become stressed by your friend’s OCD and his or her progress (or lack of progress) during treatment.  It’s important to remember that although you can provide your friend much support, you aren’t responsible for his or her recovery.  And it’s also important for you to keep up your normal routine and activities with your family, at school, and with your other friends.  When you take care of yourself, you’re in a much better position to help your friend.

(9) You may want to consider attending a local support group meeting that is open to friends and family members of  OCD sufferers (or an online support group) to learn how others in your position have supported their friends with OCD.  It’s very possible that people in your group may have had guidance from their loved one’s cognitive behavior therapist and can share their experiences and knowledge with you.

It’s natural for you to want your friendship to return to normal as quickly as possible.  But if your friend has suffered with OCD for years, it may take some time for him or her to get better.  The good news is that the journey to recovery will most likely take much less time than the time OCD has already consumed.

Go to More Resources

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In some cases, OCD sufferers refuse to seek treatment for OCD, even though it’s having an adverse effect not only on themselves but also on friends and family members.  Some people with OCD downplay their symptoms or refuse to acknowledge that a problem exists.  They may do very little to find help or even to learn about OCD.  In fact, their friends and families may be expending far more time and energy trying to find a solution to the problem than they are.  In other cases, people with OCD are very knowledgeable about their disorder and understand that effective treatment is available.  But they still refuse to get treated.  And if they do feel pressured into seeking therapy, they may not fully participate in the therapy process. 

The bottom line is that when OCD sufferers don’t commit to treatment, they can’t experience relief from OCD.  This can be extremely frustrating for friends who want to see someone they care about recover from this disorder.  And it can be all the more distressing for the person with OCD.  

Individuals with OCD who find it extremely difficult to begin or commit to therapy are sometimes referred to as “recovery avoiders.”  Understanding some of the reasons why your friend may be a recovery avoider can be a first step toward overcoming this obstacle:

• Comfort with OCD:  Rituals – whether they are observable or performed mentally – have become so familiar that they seem like a “normal” part of life.
• Fear of change:  Some people with OCD are afraid to begin treatment because they feel a sense of safety and control over their symptoms with their current coping mechanisms.  Control may be very difficult to give up. 
• Insufficient incentive to get better:  In general, people with OCD won’t seek recovery unless the incentive (something that pushes a person to act) to get better is stronger than the fear of getting better.
• Being unable to imagine life without OCD:  Life without rituals seems too good to be true, or impossible to achieve.
• Fears related to treatment:  The individual with OCD has fears about medication and its possible side effects or has fears of increased anxiety during treatment (e.g., the temporary increases in anxiety associated with CBT).
• Obsessing about the “perfect” treatment:  The person with OCD gets “stuck” in a ritual of searching for the perfect treatment program or treatment provider and never actually begins treatment.

Unfortunately, friends and family members sometimes unintentionally contribute to recovery avoidance.  First, friends and family members frequently enable OCD by accommodating OCD rituals.  In other words, they participate in rituals to help the one they care about cope with distress.  Maybe you’ve found yourself doing some of the following to try to help your friend:

• Getting involved in rituals by checking door locks, helping decontaminate clothing, food or even entire rooms;
• Providing constant reassurances when he or she seeks reassurance about something;
• Giving or buying him or her items needed to carry out rituals, such as soap for hand washing;
• Allowing/helping your friend avoid certain stimuli that trigger OCD symptoms, triggers, such as taking a longer route to a destination to avoid a feared location;
• Tolerating delays associated with ritual completion, such as waiting in the car to drive to school while your friend completes a washing ritual in the house; or
• Trying to have rational conversations or debates with him or her about the OCD behavior.

If you’ve found yourself doing any of the above, you’ve probably learned by now that none of this will actually make OCD stop.  In fact, participating in OCD rituals actually allows or enables the compulsions to persist and even become stronger. 

A second way in which friends and family members contribute to recovery avoidance is by minimizing the severity of the OCD sufferer’s problem.  The message they’re sending the individual with OCD is essentially that he or she should be able to change his or her behavior simply because of something the friend or family member says or does by nagging, yelling, threatening, shaming, etc.  Unfortunately, these tactics not only are usually ineffective but also may produce more fear on the part of the individual with OCD.  Increased fear, in turn, may unintentionally strengthen recovery avoidance.

How You Can Help

Learn about OCD and its Treatment

To help your friend, you will need to better understand what he or she goes through with this frequently debilitating disorder.  We recommend you visit the OCD Facts, Individuals, or Parents section of this web site for more information about:

• Who is affected by OCD
• What OCD is (and what OCD isn’t)
• What causes OCD (and what doesn’t cause it)
• What OCD symptoms are -- obsessions and compulsions, with examples
• What related conditions may complicate OCD or exist with OCD
• What kind of treatment is recommended
• Treatment challenges, resistance and recovery avoidance
• Medication information

You can access the OCD Facts, Individuals and Parents sections through the Home page of this web site, or through these links:

• Go to OCD Facts section
• Go to Individuals section
• Go to Parents section

If your friend has been resistant to learning about OCD, you may try to share as much of this information as possible with him or her, as well as other family members and friends who are interested.  You may also want to bring OCD literature, DVDs, audiotapes, web site listings or other information and offer it to your friend.  Or you may just want to leave it around -- but in a strategic place -- so he or she can review it alone.

Become a Catalyst for Change

First, even though you may be extremely frustrated that your friend is avoiding recovery, try to be as understanding as possible.  Just knowing some of the reasons why people with OCD avoid recovery may be helpful.  Also, try to put yourself in your friend’s shoes by recognizing that most of us have avoided dealing with an unpleasant problem at some point in our lives.  Judging the OCD sufferer as lazy, unmotivated, selfish or as someone who likes being sick will do nothing to help him or her change or seek help.

Second, if you’ve been involved in your friend’s rituals, prearrange a time to have a discussion with him or her.  During this discussion you’ll want to remind your friend that participating in the rituals may result in a temporary feeling of relief, but that it doesn’t help decrease the symptoms in the long term.  In fact, it makes the symptoms worse. 

You’ll also want to discuss the ways you’ve been accommodating the OCD and how important it is to work together as you start to decrease your participation in rituals.  Try to help your friend understand that you’re doing this because you care about and want to support him or her.  You’re not doing this to be mean or spiteful; you want him or her to overcome OCD.  The sole purpose of this discussion is to express your concerns and set some limits – not to nag or lecture.

Third, it may be helpful to talk to your friend about support groups.  He or she may be more willing to participate in a group (at least initially) than one-on-one in a therapist’s office.  It might be helpful to offer to attend a support group meeting with your friend.  Alternatively, give him or her information about online support groups (such as those at the end of our list of local support groups).

Fourth, take care of yourself.  It can be easy for you to become stressed by your friend’s OCD and lack of willingness to participate in treatment.  But it’s important to remember that, although you can provide your friend a lot of support, you aren’t responsible for his or her recovery.  And it’s also important for you to keep up your normal routine and activities with your family, at school, and with your other friends.  When you take care of yourself, you’re in a much better position to help your friend with OCD.

Fifth, you may want to consider attending a local support group meeting that is open to friends and family members of  OCD sufferers (or an online support group) to learn how others in your position have influenced friends to commit to treatment.  It’s very possible that people in your group may have had guidance from their loved one’s cognitive behavior therapist and can share their experiences and knowledge with you.  A support group may also help you come to terms with and mange your own feelings and emotions.

Go to More Resources

Go to Managing Emotions

Back to Information for Friends

Friends must understand that fighting OCD is no easy matter.  If your friend is undergoing Cognitive Behavior Therapy, or CBT, it’s important to remember that this form of therapy is hard work.  He or she will have to attend therapy sessions and do homework exercises between sessions. And it can be difficult not only for the person who has OCD but also for anyone who cares about him or her. 

During CBT, your friend will be facing his or her fears and experiencing increased anxiety levels.  It’s normal for him or her to go through many emotional ups and downs: hopefulness and feelings of success at times, as well as frustration, exhaustion, feelings of failure and a desire to give up at other times.  And if your friend is on medication, he or she may also experience some unpleasant side effects initially.  It’s only natural that you, as a friend, will be affected by this roller coaster of emotions.

Keep in mind that your support is very important in your friend’s fight against OCD.  As difficult as it may be at times, try to remain as positive as possible and refrain from scolding or negative remarks.  Research has indicated that negative emotions such as criticism and hostility may actually worsen OCD symptoms and interfere with treatment.  Also remember to avoid asking your friend “Why don’t you just stop it?”  If your friend could just stop the OCD behavior at will, he or she would have been the first one on the face of the earth to have stopped it! 

There may be times when your friend is struggling with CBT sessions or homework and may want to give up.  You can help by encouraging him or her to persevere with CBT and letting him or her know that you have faith in his or her ability to succeed.  Remind your friend how difficult this work is, and always praise him or her for effort – even when he or she isn’t successful.

Some people have found that it’s helpful to use humor, whenever appropriate.  In some cases, seeing the humor – if not absurdity – in some of the OCD symptoms may help your friend become more detached from the disorder.  It’s extremely important, though, to use your best judgment as to when to use humor.  Remember that a situation is funny only if your friend finds it funny, as well.  Needless to say, inappropriately laughing at or mocking OCD behavior can be very harmful.

Even after treatment, relapses – or reoccurrences of OCD symptoms – can and do happen.  It may be frustrating to you, but it can be downright frightening for your friend.  Relapses in people who have been treated successfully for OCD are common, and  “booster” sessions of Cognitive Behavior Therapy are a customary part of the treatment and recovery process.  You can help your friend by remaining positive, reiterating that many people who’ve been treated for OCD experience relapses and encouraging him or her to seek the necessary help. 

You may also want to consider attending a local support group meeting that is open to friends and family members of  OCD sufferers (or an online support group) to learn how others in your position have supported their friends with OCD.  It’s very possible that people in your group may have had guidance from their loved one’s cognitive behavior therapist and can share their experiences and knowledge with you.

It can be easy for you to become stressed by your friend’s OCD and his or her progress (or lack of progress) during treatment.  It’s important to remember that although you can provide your friend much support, you aren’t responsible for his or her recovery.  And it’s also important for you to keep up your normal routine and activities with your family, at school, and with your other friends.  When you take care of yourself, you’re in a much better position to help your friend.

It’s natural for you to want your friendship to return to normal, and quickly!  But if your friend has suffered with OCD for years, it may take some time for him or her to get better.  The good news is that the journey to recovery will most likely take much less time than the time OCD has already consumed.

Back to Information for Friends

When a friend has OCD, it can be confusing.  The symptoms may seem to appear slowly and become more and more noticeable over time.  Or maybe you haven’t been friends very long, but you’ve come to realize your new friend suffers from OCD. Either way, you may be drawn into his or her OCD behavior.  Being a real friend involves having the courage to stop participating in rituals or avoidance behaviors.

Maybe you’ve found yourself doing some of the following to try to help your friend:

• Getting involved in rituals by checking door locks, helping decontaminate clothing, food or even entire rooms;
• Providing constant reassurances when he or she seeks reassurance about something;
• Giving or buying him or her items needed to carry out rituals, such as soap for hand washing;
• Allowing/helping your friend avoid certain stimuli that trigger OCD symptoms, triggers, such as taking a longer route to a destination to avoid a feared location;
• Tolerating delays associated with ritual completion, such as waiting in the car to drive to school while your friend completes a washing ritual in the house; or
• Trying to have rational conversations or debates with him or her about the OCD behavior.

If you’ve found yourself doing any of the above, you’ve probably learned by now that none of this will actually make OCD stop.  In fact, participating in OCD rituals actually allows or enables them to persist and even become stronger.  

Protecting a friend from the negative consequences of obsessions and compulsions may also decrease motivation to get treatment.  If you and your friend drive to school together, for example, and you’re constantly waiting for her in the car while she completes washing rituals in the house, she’s going to continue performing her rituals.  If you start driving to school without her, however, and she’s late to school, it may motivate her to seek treatment. 

To help your friend gain control over OCD, you have to change how you interact with that person and stop reinforcing OCD behavior.  You can be supportive of your friend who is suffering, but stop supporting the disorder.

How Do I Stop?

It’s important to talk with and remind your friend that participating in the rituals may make him or her feel better temporarily, but that it doesn’t help decrease the symptoms in the long term.  In fact, it makes the symptoms worse. 

Discuss with your friend the ways you’ve been accommodating the OCD and how important it is to work together as you start to decrease your participation in rituals.  Try to help your friend understand that you’re doing this because you care about and want to support him or her.  You’re not doing this to be mean or spiteful; you want him or her to overcome OCD.  

It’s also important that you not feel as if your friend’s OCD is your responsibility.  And don’t feel guilty if you don’t participate in his or her rituals.  Remember that if you do get involved, you aren’t helping that person –  you are reinforcing the OCD and are part of the problem rather than the solution.

You may also want to attend a local support group meeting that is open to friends and family members of  OCD sufferers (or an online support group) to learn how others in your position have stopped accommodating OCD behavior.  It’s very possible that people in your group may have had guidance from their loved one’s cognitive behavior therapist and can share their experiences and knowledge with you.

Go to More Resources

Back to Information for Friends

Because it’s important to find a therapist who has the proper training, skills and experience to effectively implement Cognitive Behavior Therapy (CBT) – and is also an individual with whom your loved one feels comfortable – it’s worthwhile to interview a potential therapist.  Here are some questions to ask a therapist before committing to treatment:

• Are you trained to use cognitive behavior therapy to treat OCD?
• Where did you obtain your training?
• How many clients with OCD have you successfully treated?
• Are you ever willing to leave the office for treatment sessions?
• Will you conduct therapy sessions by telephone or online (e.g., Skype) if necessary?
• Are you licensed to practice in this state?
• What techniques do you use to treat this specific form of OCD?  (You want them to mention CBT involving Exposure and Response Prevention, or ERP).

Avoid a treatment provider who:

• Claims that the main technique for managing OCD is relaxation or talk therapy or play therapy for children;
• Believes that OCD is caused by childhood trauma, toilet training, self-esteem issues or family dynamics;
• Blames parents or one’s upbringing for OCD;
• Seems guarded or angry at questions about treatment techniques; or
• Claims that medication alone is the most appropriate treatment for OCD

Your family member’s relationship with his or her therapist is vital.  During therapy, your loved one will have to discuss fears and behaviors – which may be very uncomfortable – as well as take on ERP exercises the therapist prescribes.  Finding the right person is important not only for your loved one but also for your entire family.  A therapist can play a significant role in helping a spouse or other family members learn how to respond appropriately to OCD behavior.  In addition, a professional may be able to help you and other family members learn to manage negative emotions and other difficulties that result from living with a person who has OCD.  It’s extremely important that the family work together as a team to gain control over this disorder.

You can contact Beyond OCD to discuss therapy options for OCD.

Back to Information for Families

Fears about the future together are normal. Facing your fears together is healthy.

(Note: The use of the term “spouse” in the article below is intended to include any two individuals in a relationship.)

Getting effective treatment for your spouse should be your first priority, because that’s the first step toward recovery from OCD. But before undergoing treatment, your loved one must be evaluated by a mental health provider who will evaluate him or her for the presence of any other mental health issues requiring treatment (e.g., depression, substance abuse) in addition to OCD.  

If your loved one has OCD, and you’re experiencing relationship troubles, it’s a good idea for you to have a conversation with his or her therapist, as well.  By taking a step back and looking at the whole relationship – not just the OCD – the therapist may be able to uncover other stresses in your relationship.  OCD can present many challenges in a relationship, including threats to physical and emotion intimacy, and interference in social activities and relationships with others, not to mention fears about the future.

Some couples experience relationship difficulties as they try to decide whether or not to have children.  When one or both partners have OCD, prospective parents may be extremely concerned about the possibility that their children could inherit OCD.  It’s difficult to precisely estimate the chances that a parent will pass OCD on (i.e., genetically) to a child, even if one of the parents has OCD or a family history of OCD.  In most cases, however, the chances are small that your children will have OCD.  Be sure to talk with your doctor about your concerns.  Also keep in mind that many major medical centers have genetics counselors on staff or by referral who can discuss this issue with you.  The genetics of OCD is an area of active research, and new developments appear frequently. 

You may also be experiencing any other number of daily stressors in your relationship that all couples face (e.g., financial difficulties, job-related concerns).  Fears about the future together – whether or not they are related to OCD – are normal.  There are certain steps you can take toward building or rebuilding a healthy relationship.  One is taking care of yourselves physically, mentally and spiritually during times of stress.  Another is facing your fears together.  The choice is yours.

You can read more about OCD, related disorders in the OCD Facts or Individuals sections of this web site.  You may also benefit from attending a support group (in person or online) to learn from the experiences of others who have battled and continue to battle OCD.

Go to OCD Facts section

Go to Individuals section

Find a support group

Back to Information for Families

It’s important to realize that when a family member has OCD, everyone in the family experiences emotional ups and downs.  One day, you may feel as if your loved one is making great strides in the fight against OCD; the next day, it may seem that he or she isn’t even trying.  If your loved one is taking medication, he or she may also experience some unpleasant side effects initially.  So you may find yourself experiencing the whole gamut of emotions – from happiness and optimism to frustration, anger and resentment. 

Negative emotions may have built because your loved one has suffered with OCD for years, and you and other family members have been unwilling or reluctant participants in the rituals for a long time.  Keep in mind that during treatment, the OCD sufferer will also have high and low periods – periods of hopefulness as well as times of hopelessness.  All of this is a normal part of the therapy process. 

You are in a unique position to help your family member in his or her fight against OCD.  As difficult as it may be at times, trying to remain as positive as possible is one of the most important ways you can support your loved one.  Research has indicated that when family members express negative emotions (e.g., criticism, hostility) toward the individual with OCD, symptoms may worsen.  Critical or hostile remarks may also impede successful treatment.  Therefore, refrain from scolding or making personal attacks on your family member.  Very importantly, avoid telling him or her to “Just stop it!!!”  If your loved could just stop the OCD behavior at will, he or she would have been the first one on the face of the planet to have stopped it. 

There will be times when your loved one is struggling with Cognitive Behavior Therapy homework exercises.  He or she may feel overwhelmed and may want to give up. You can help by encouraging him or her get back on track with exposure exercises and remaining optimistic.   Let your loved one know that you have faith in his or her ability to succeed.  Acknowledge how difficult a task must be, and always praise him or her for effort – even when he or she isn’t successful.

One other strategy family members have found useful is to keep a sense of humor, whenever possible.  In some cases, seeing the humor – if not absurdity – in some of the OCD symptoms may help your loved one become more detached from the disorder.  It’s extremely important, however, to use your best judgment as to when using humor might be appropriate.  The situation is funny only if your loved one finds it funny, as well.  Inappropriately laughing at or mocking OCD behavior can be very destructive.

Another very important component of managing emotions within the family is to try to keep your family routine as “normal” as possible.  At first, family members may choose to “keep the peace” by giving in to their loved ones rituals – rituals that preclude them from having people over or using a particular piece of furniture.  It’s important to preserve family life and routines through negotiation and limit setting; your loved one must learn to tolerate exposure to his or her fears and understand that you and other family members have needs that must be met.  The cognitive behavior therapist treating your loved one may be very helpful with this process,

Even after treatment, relapses can and do happen.  It may be frustrating to you, but it can be downright frightening for your loved one.  Knowing that symptoms commonly reoccur among individuals who have been treated successfully for OCD is empowering, as is being aware that “booster” sessions of Cognitive Behavior Therapy are a customary part of the treatment and recovery process.  You can help your loved one by remaining positive, reminding him or her that people with OCD frequently experience relapses and encouraging him or her to seek the necessary help. 

The bottom line: Communicate positively, directly, and clearly with your loved one.  Try to be as kind and patient as possible; separate your loved one from the OCD and focus on his or her positive qualities; and keep family life as normal as possible and the home a low-stress environment.  The good news is that the journey to recovery will most likely take much less time than the time OCD has already consumed.

Take Care of Yourself

Research has indicated that family members report some – if not severe – distress adjusting to a loved one’s OCD.  And yet they seldom seek the professional help they need; instead, they usually focus on the individual with OCD.  Living with or caring for a spouse can be extremely stressful, and it’s critical that you take care of your own physical and psychological needs.  Be sure to seek out help when you need it; it’s a sign of strength, not weakness.  And when you’re less overwhelmed by frustration, guilt, and other negative emotions, you are in a better state of mind and will actually be more effective in helping your spouse.

You may find it helpful to talk with your loved one’s cognitive behavior therapist for guidance or seek help on your own.  You may also want to consider attending a local OCD support group that is open to family members or an online group.  Talking with others who have had similar experiences and learning about how they have approached family difficulties can be extremely helpful, if not therapeutic.

Back to Information for Families

You can be highly influential and effective in helping your spouse gain control over this heartbreaking disorder. Rely on the CBT therapist to help guide you through the emotional maze as your spouse copes with OCD.

(Note: The use of the term “spouse” in the article below is meant to include any two individuals who are in a relationship.)

Being the spouse of an individual who is struggling with OCD can be extremely difficult, for so many different reasons.  Perhaps you’ve had to take on what feels like more than your fair share of household responsibilities.  Maybe you now have to do all the cleaning and laundry due to your spouse’s contamination fears.  Or perhaps your spouse has fears of certain numbers and can no longer write checks, pay bills, or balance bank statements. And those responsibilities have fallen squarely on your shoulders. 

Your social relationships and social activities may have taken a hit, as well.  The rituals your spouse has to complete before leaving the house make it difficult, if not impossible, to attend social events.  Or due to irrational fears, your spouse can’t even go out in public.  You feel guilty if you go to parties or engage in other activities by yourself.  You may also find yourself feeling lonely and isolated from people who once held important places in your lives.  And you end up feeling frustrated, angry,  or even betrayed.  Rest assured that this  reaction to your spouse’s OCD is not unique.  Loving partners who find OCD invading and taking over their lives experience a wide range of emotions.

By reading this web site, you’ve already taken a positive step toward helping your loved one overcome OCD.  Don’t stop now.  Remember that no one wants to live a life ruled by OCD.  You can be highly influential and effective in helping your spouse gain control over this oftentimes heartbreaking disorder.

Why Me? Why Now?

Those are good questions.  But not surprisingly, they have no easy answers.

In some cases, people who develop OCD symptoms as an adult had OCD at some time in their past – before they met their spouses – but were successful in getting control over their symptoms.  It’s also possible that your spouse was genetically predisposed to the disorder, and it was triggered by stress or an illness after you got married.  Traumatic brain injury can even trigger OCD or OCD-like symptoms.  It’s even possible that your spouse hid his or her OCD from you because of embarrassment or, worse yet, because the thought of losing you – if you came to know about the OCD – would be too difficult to bear.

In any case, OCD is neither the fault of the person who develops it nor the fault of a spouse.  It’s no one’s fault.  OCD is an anxiety disorder that, like all anxiety disorders, is neurobiological in nature.  (You can remind each other of this by refreshing your understanding of the physiology of OCD in the OCD Facts or Individuals sections of this web site.)  So it does no good to blame each other for the presence of OCD.  In fact, blaming can be counterproductive, if not harmful. 

What’s most important is that you avoid dwelling on negative thoughts and concentrate on finding a cognitive behavior therapist who can treat your spouse. Many doctors are not familiar enough with OCD to recommend Cognitive Behavior Therapy (CBT).  But since CBT, sometimes in combination with medication, is the only scientifically-supported treatment for OCD, don’t let anyone talk you into another alternative.  While psychotherapy, couples counseling and other treatments may help individuals with issues they’re experiencing because of the OCD, they do not treat the OCD itself.  Nor do hypnosis, herbal or homeopathic remedies, relaxation therapy, eye movement desensitization reprocessing (EMDR) or dietary changes. With OCD, urge (don’t nag) your spouse to seek and participate in CBT.

What Can I Do to Help?

Some very important steps to help your loved one can begin with you:

Learn about OCD

You will need to understand what your spouse goes through with this frequently debilitating disorder.  We recommend that you visit the OCD Facts or Individuals section of this web site for more information about:

• Who is affected by OCD
• What OCD is (and what OCD isn’t)
• What causes OCD (and what doesn’t cause it)
• What OCD symptoms are – obsessions and compulsions, with examples
• What related conditions may complicate OCD or exist with OCD
• What kind of treatment is recommended
• Treatment challenges, resistance and recovery avoidance
• Medication information

You can access the OCD Facts or Individuals sections through the Home page of this web site, or through these links:

Go to OCD Facts section

Go to Individuals section

Become a Catalyst for Change

We urge you to follow these guidelines:

• Help your spouse find appropriate treatment for OCD and encourage him or her to actively participate in the therapy process.  An extensive body of research supports Cognitive Behavior Therapy (CBT), which is comprised of Exposure and Response Prevention (ERP) and Cognitive Therapy, as the most effective behavioral treatment for OCD.  Medication is sometimes prescribed in conjunction with CBT.
• Stop enabling OCD in your home or your relationship.  Participating in rituals with your loved one or accommodating avoidance behavior actually does not help.  In fact, the effect can be just the opposite.  Learn more.
•  Try to openly communicate with one another about OCD stressors.  The challenges related to OCD situations, OCD’s potential challenge to emotional and physical intimacy – as well as all the other daily stressors couples face – may harm a relationship if not shared.
• Try to establish a positive emotional climate in the home.  The importance of how you communicate with your loved one as well as the level of support you provide cannot be overemphasized.  Learn more about how you can manage emotions and attitudes as you interact with the person who has OCD.

If this sounds easier said than done, we understand your skepticism.  Beyond OCD’s mission is to help people with OCD get relief, help their families and friends develop the key skills to become agents of change and help initiate dramatic improvements for everyone in the life of an OCD sufferer.  The following sections will help you get started:

• Information for Families (including Spouses)
• Information for Friends

Take Care of Yourself

Research has indicated that trying to adjust to a loved one’s OCD can result in some – if not severe – distress.  And yet they seldom seek the professional help they need; instead, they usually focus on the individual with OCD.  Living with or caring for a spouse can be extremely stressful, and it’s critical that you take care of your own physical and psychological needs.  Be sure to seek out help when you need it; it’s a sign of strength, not weakness.  And when you’re less overwhelmed by frustration, guilt, and other negative emotions, you are in a better state of mind and will actually be more effective in helping your spouse.

You may need to talk with your loved one’s cognitive behavior therapist for guidance or seek help on your own.  Don’t be afraid to bring up sensitive issues such as physical and emotional intimacy.  OCD can make you and your spouse vulnerable in ways that can be very painful, and it’s normal to protect emotions by building barriers to intimacy.  

You may also want to consider attending a local OCD support group that is open to spouses and family members.  Talking with others who have had similar experiences and learning about how they have approached family difficulties can be extremely helpful, if not therapeutic.

Can We Ever Be Like We Were Before?

Life is filled with uncertainty, and life with a person who suffers from OCD is no exception.  But there is certainly hope for recovery from OCD.  With proper treatment, it is possible to navigate the emotional maze you’re experiencing and rebuild a solid relationship with your spouse.

Choosing a Therapist

Stories of successful recovery from OCD

Back to Information for Families

One exercise that many cognitive behavior therapists use in treating OCD is the family contract.  The purpose of this contract is to develop a plan for helping you and your family members stop accommodating your loved one's OCD.   The therapist may have a sample form or blank template you can use to create your family contract.

An Example of a Family Contract

The Situation:	Dad has OCD and  his obsessions involve safety issues.  In response to these obsessions, Dad engages in a number of safety rituals for several hours each morning before he goes to work.  These include checking to make sure all the doors and windows are locked and that the kitchen stove burners and all other appliances are off.  But he can’t leave the house to go to work until he has also questioned each family member multiple times about whether they have checked to make sure doors and windows are locked and the kitchen stove burners and all appliances are indeed turned off.
The Problem:	Family members repeatedly reassure Dad that they have checked the door and window locks as well as the stove burners and appliance throughout the house.  They even show him how they are checking the doors and windows, the stove burners and appliances.  This behavior makes Dad feel better, but only for the short-term.
The Goal:	Everyone in the family wants Dad to stop the incessant checking behavior, and they all want to stop having to help him do it.
The Plan:	Over the course of the next several weeks, the family will gradually decrease the number of times they check and reassure him about doors and windows being locked and burners and appliances being off.   They will also change the way they interact with Dad -- in terms of both their actions and dialogue.   Dad will accept this course of action even though his anxiety over safety fears will increase temporarily.
The Contract:	The cognitive behavior therapist who treats the person with OCD helps the family develop a written document that includes their specific goals as well as detailed strategies for achieving those goals: how much to decrease participation in Dad’s rituals at each point along a specific timeline.  The therapist also helps family members develop special wording to use (i.e., what to say) when Dad asks for reassurance to decrease his reassurance-seeking behavior and defuse his repeated questioning.  During his Cognitive Behavior Therapy sessions, Dad agrees to perform his exposure and response prevention (ERP) assignments (given by the therapist) at home within the timeline.  Dad also understands that the reductions in family reassurances are a part of his ERP therapy.
The Review	Together with Dad’s therapist, the family monitors progress. Any necessary adjustments to the contract timeline, goals or strategies being implemented are made so that everyone can be successful.
The Reward	The family agrees to periodic rewards for successfully following the contract.  They decide to go out to dinner or a movie at the end of each week in which they are successful in completing the goal for the week’s contract.

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You can be supportive of the person you love who is suffering, but stop supporting the disorder.  When the family stops accommodating OCD behavior, the person who suffers from OCD can become more motivated to seek treatment.

Perhaps you’ve already tried a variety of ways to help your family member live with his or her OCD by:

• Getting involved in performing rituals, such as checking door locks,
• Helping decontaminate clothing, food or even entire rooms;
• Providing verbal reassurances to excessive reassurance-seeking requests;
• Providing items necessary to carry out rituals, such as supplying soap for hand washing;
• Allowing/helping the person avoid certain stimuli that serve as OCD triggers, such as taking a longer route to a destination to avoid a feared location;
• Tolerating delays associated with ritual completion, such as waiting in the car to drive to school while the family member completes a washing ritual in the house; or
• Trying to have rational conversations or debates with him or her about the OCD behavior.

None of this will actually make OCD stop.  In fact, participating in OCD rituals actually allows or enables the compulsions to persist and even become stronger. Protecting a family member from the negative consequences of obsessions and compulsions can also decrease his or her motivation to obtain treatment.  A man who starts to be late for work because family members no longer help him with checking rituals before leaving home, for example, may be motivated to seek treatment. 

To make positive changes, you need to realize that the entire family must adopt new behaviors – everyone needs to change the way he or she interacts with the OCD sufferer and stop reinforcing OCD behavior.  You can be supportive of the person you love who is suffering, but stop supporting the disorder.

How Do I Stop?

It’s important to talk with your loved one and remind him or her that your participating in the rituals may make him or her feel better temporarily, but that it doesn’t help decrease the symptoms in the long term.  In fact, it makes the symptoms worse.

Discuss with your family member the ways you’ve been accommodating the OCD and how important it is to work together as you start to decrease your participation in rituals.  Try to help your loved one understand that you’re doing this because you care about and want to support him or her.  You’re not doing this to be mean or spiteful; you want him or her to overcome OCD.

Two OCD experts have described the concept of “mapping” as a tool to help family members disengage from accommodating (see full article).  In mapping, specific OCD symptoms that both the caregivers and the sufferer agree upon are targeted for treatment.  Caregivers identify the symptoms they will no longer tolerate, and a gradual, systematic plan for the caregiver to disengage from accommodating is developed.  This plan will allow the individual with OCD to take on more responsibility and reduce the caregiver’s “duties.”

It may be very beneficial for your loved one’s cognitive behavior therapist guide you through the mapping process or any other plan you devise to decrease and ultimately stop your participation in OCD rituals.  Doing it with the help of a therapist is important, because sudden changes in responses can cause things at home to spin out of control, creating anger and increased stress that can worsen symptoms.

In fact, many cognitive behavior therapists work with families to develop a written agreement known as a “family contract” or “behavioral contract” to help family members stop accommodating OCD.  It’s a “roadmap” you follow when you agree to work together as a team to fight OCD.  When all members of the family agree upon the specific OCD behaviors they’ll stop accommodating, the chances of reducing symptoms of OCD can dramatically increase.

Your goal is to help restore balance and normalcy in the home.  A better future begins with encouraging your loved one to get treatment, discontinuing accommodating OCD behavior and helping restore self-esteem by supporting the OCD sufferer with understanding and belief in his or her ability to succeed.  And remember that taking care of your own physical and psychological needs is critical to being able to help your loved one.

Learn more about a family contract

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Family OCD Contracts are like business contracts -- everyone must agree on what’s included and then stick with it.

Family members often participate in a loved one’s OCD rituals because they believe they are helping him or her.  Unfortunately, participating in, or accommodating, rituals actually allows or enables compulsions to persist and even become stronger.  Therefore, one of the most important ways family members can support a loved one with OCD is by ending their participation in OCD rituals.  This can be a difficult process, however.

To help family members stop accommodating OCD, cognitive behavior therapists sometimes work with families to develop a written agreement known as a “family contract” or “behavioral contract.”  It’s a “roadmap” you follow when you agree to work together as a team to fight OCD.  When all members of the family agree upon the specific OCD behaviors they’ll stop accommodating, the chances of reducing symptoms of OCD can dramatically increase.

Developing a Contract

Much like business contracts, the key to developing an effective family contract depends on careful initial planning.  When you develop a contract, it is essential that you be very clear in articulating the problems you want to solve and determining a step-by-step approach with a viable time line.  If you overlook parts of the problem, take a too-aggressive approach or build a timeline that is too long or short, you likely won’t see the changes you expect.  Therefore, it’s very important to first carefully identify the specific situations that trigger your loved one’s OCD symptoms and all of your accommodating behaviors.

Once you have determined how you’ve been accommodating OCD, goals for stopping your accommodations will be developed (one at a time) and written into an OCD family contract.  It’s very important that everyone be in agreement about the goals as they are set – you, your loved one, and all other family members.  Many therapists prefer to start with goals that are small and easy to attain so success is achieved and confidence in overcoming previously disruptive patterns of behavior has an opportunity to build.  In some cases, the clinician may suggest other goals that involve encouraging and supporting your loved one.  In addition, the therapist will need to ensure that the accommodation goals are in sync with your loved one’s Exposure and Response Prevention plan.

Click here for an example of an OCD Family Contract

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When Someone You Love Has OCD

If you feel frustrated, angry, overwhelmed or hopeless, you are not alone.

Today there are new and better strategies for coping with OCD.

Obsessive Compulsive Disorder (OCD) affects millions of people in the U.S. If one of those people is someone you love, you know that the impact of OCD reaches far beyond the person who has been diagnosed with this disorder.

Much has been written about OCD and its treatment. Much less has been written about the spouses, families and friends who must watch a loved one suffer, and who must also live with the effects of the disorder every day. This section of our web site is a guide for you -- to help you effectively help your loved one gain control over OCD -- and restore relationships that have been strained by the demands and heartbreak of this disorder.

Steps To A Better Life

Life with a person who has OCD is filled with conflicting emotions. If you feel frustrated, angry, overwhelmed or hopeless, you are not alone. Today there are new and better strategies to apply to OCD-related situations. Families and friends can now take advantage of “tools” that are effective in improving interactions and, at the same time, can help in the treatment process for the OCD sufferer.

First Things First

Some very important steps to help your loved one begin with you:

Learn about OCD

You will need to understand what your loved one goes through with this frequently debilitating disorder. We recommend you visit the OCD Facts, Individuals, or Parents section of this web site for more information about:

• Who is affected by OCD
• What OCD is (and what OCD isn’t)
• What causes OCD (and what doesn’t cause it)
• What OCD symptoms are -- obsessions and compulsions, with examples
• What related conditions may complicate OCD or exist with OCD
• What kind of treatment is recommended
• Treatment challenges, resistance and recovery avoidance
• Medication information

You can access the OCD Facts, Individuals and Parents sections through the Home page of this web site, or through these links:

• Go to OCD Facts section
• Go to Individuals section
• Go to Parents section

Become a Catalyst for Change

We urge you to follow these guidelines:

• Encourage and help your loved one get treatment for OCD. Effective treatment is the most important step in gaining relief.
• Stop enabling OCD in your household or in your relationship. Participating in rituals or accommodating avoidance behavior actually does not help. The effect can be just the opposite.

If this sounds easier said than done, we understand your skepticism. Beyond OCD ’s mission is to help people with OCD get relief, and to help their families and friends develop the key skills to become agents of change -- and help to make dramatic improvements for everyone in the life of an OCD sufferer. The following sections will help you get started:

• Information for Families (including Spouses)
• Information for Friends

More Ways You Can Help Fight OCD

You can help to bring information and education to people who have OCD and to the people who can make a difference in the quality of their lives -- including family and friends, educators, clergy and the media.

Click here to see how you can help

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Committed to OCD Education and Support

Beyond OCD, the leading provider of consumer-friendly resources to cope with and conquer Obsessive Compulsive Disorder (OCD), works to increase public and professional awareness of OCD, educate and support people with OCD and their families, and encourage research into new treatments and a cure.

Requests for our services have risen to a new level, largely due to increased media attention on mental health issues and brain disorders such as OCD.  We reach out with encouragement and compassion to assure people with OCD that they are not alone and help them to manage the disorder.

Founded in 1994, we are a registered 501(c)(3) nonprofit organization.

Our Services

Consumer Education and Support

We provide OCD sufferers and their families with the latest information on this disorder, information about local treatment providers and support groups and the opportunity to discuss their options with an OCD-knowledgeable professional. 

In Chicago, we sponsor a mutual self-help group for adults with OCD, OCD spectrum disorders and co-occurring depression or anxiety; a mental health professional helps facilitate the group.

Our web site is one of the most comprehensive sources of information for people affected by OCD and is also a widely-used resource for medical professionals, educators, clergy and the media.  Our popular series of OCD Guides offers practical information and steps to improve the lives of OCD sufferers and their families.

Professional Education

We offer mental health professionals opportunities to increase their knowledge of OCD and improve their ability to treat patients effectively.

Public Awareness

We provide OCD-knowledgeable individuals to speak at public forums, at schools and with the news media.  Our speakers not only help audiences understand more about OCD but also try to reduce the stigma of mental illness.

We believe in the power of personal connections.  Our Chicago-area special forums give the OCD community the chance to come together to learn more about the disorder and meet one another.  These events feature treatment providers who share their knowledge and people who describe their real struggles with and triumphs over OCD.

For Teachers, Counselors and Social Workers

Our OCD Education Station web site is a comprehensive resource developed by Beyond OCD especially for the needs of teachers, school psychologists, counselors, social workers, administrators and other school personnel.  With the right knowledge, any of these professionals can make the difference in the life of a child struggling with this potentially devastating disorder.

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More Resources

OCD Guides

About Us

Contact Us

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OCD is not a new disorder and it's not suddenly increasing.  But years ago, much less was known about it than is known today.  There were no consumer books written about OCD until the late 1980s.  Until relatively recently, information was not readily available on the Internet.  And just decades ago, research on OCD was virtually nonexistent.  As a result, few tools were available to help professionals understand OCD – or to help struggling parents make sense of their child’s unusual behavior and treat it appropriately.  If an adult developed OCD when he or she was young, there is a strong possibility that it was misdiagnosed at the time.  Even today, many physicians and other health professionals do not recognize the symptoms of OCD in young people.

In the past, the stigma of having a child with a mental illness also caused many families to hide the truth for fear of gossip, discrimination and shame; many never even asked their family physician for help.  And for many families, access to mental health services was very limited.

Due to these factors, experts now believe that while OCD was present in children (and adults) in the past, the number of OCD cases was very much underreported, giving the impression that OCD is on the rise today.

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Many experts believe that Cognitive Behavior Therapy tends to be a faster-acting and more cost-effective treatment for OCD over time than medication, and it doesn’t involve the risk of side effects.  Moreover, studies have consistently shown that the positive effects of CBT are longer-lasting than those of medication: relapse rates are lower when CBT is discontinued compared with relapse rates when medication is terminated.  

For some people with OCD, however, a combination of CBT and medication is the most effective treatment.  Medication may be prescribed by a physician, for example, for those who have moderate to severe OCD or OCD with comorbid depression.  It can decrease levels of distress and help people succeed in therapy.  In fact, medications are often used on a temporary basis until the person is able to manage the disorder with therapy alone.  Once the patient is better able to manage anxiety and stress during CBT, the medication may be gradually reduced and then eliminated. 

Unfortunately, a large number of individuals with OCD are unable to access CBT because of location (e.g., individuals in rural areas may have to travel long distances to find a qualified CBT therapist); financial issues (e.g., an insurance company may not cover the cost of CBT, and families cannot afford to pay for it out of pocket); and a lack of professionals who are trained in CBT.  Furthermore, some individuals are unwilling to participate in CBT (e.g., they don’t see the senselessness of their obsessions and compulsions), or they don't respond to CBT.  In these cases, medication may need to be prescribed to treat OCD.  Of note is that many individuals are more willing and able to participate in CBT after being on medication for a period of time.

Antidepressants classified as serotonin reuptake inhibitors, which include serotonin-specific reuptake inhibitors, have been shown to be the most effective medications for most people with OCD.  Because body chemistry differs so much across individuals, the type and dosage of medication prescribed will vary.  Some people with OCD respond well to the first drug prescribed; others must try more than one (under close medical supervision) to find the medication that produces the best results. 

Most of these medications do not produce immediate symptom relief.  Some may begin to work after a few weeks, but it may take 10 to 12 weeks at therapeutic doses to be effective.  Many patients feel no positive effects for the first few weeks of treatment.  In fact, they may only experience side effects.  But after a period of time, they may see a big improvement in their symptoms.  CBT may begin at any time after medication is prescribed, depending on the person’s reaction to the drugs.

The best way to enhance the effectiveness of medication is to add behavior therapy to ongoing drug treatment.  When individuals with OCD are unresponsive to CBT and trials with a number of different SSRIs, however, clinicians sometimes add another drug to boost a particular medication’s effectiveness, overall.  This is known as augmentation therapy.  

It’s important to work with a physician (for example, a psychiatrist) who is experienced in prescribing and monitoring different medications for OCD and can assess their effectiveness.  The physician should also advise patients about possible side effects and, if the medication must be discontinued, provide instructions for tapering off the dosage. SSRIs should never be discontinued abruptly. 

Medications approved for treatment of OCD

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Cognitive Behavior Therapy

A special kind of therapy called Cognitive Behavior Therapy (CBT) is the treatment of choice for all forms of OCD.  CBT makes use of two evidence-based techniques:  Exposure and Response Prevention therapy (ERP) and Cognitive Therapy (CT).  

Exposure and response prevention involves controlled, gradual exposures to the situations that trigger a person’s obsessions and compulsions.  Over time, the person learns to respond differently to these triggers, leading to a decrease in the frequency of compulsions and the intensity of obsessions. OCD symptoms often become so mild that they’re easily ignored; sometimes they disappear.

ERP deliberately creates anxiety – for the purpose of getting better – but at a level the patient is ready to tolerate.  It takes courage to begin this type of therapy, but participants usually find that exposures are not as difficult as they had imagined. And as their fears fade and they see success (frequently early in the process), they experience a boost in confidence that gives them the motivation they need to continue with more difficult exposures. 

The first step in ERP is for the person with OCD to provide the therapist with a detailed description of his or her obsessions and compulsions, which are then ranked from the least bothersome to the most difficult.  Beginning with easier symptoms, the therapist designs “exposures,” or challenges, that put the individual in situations that trigger obsessions.  During these exposures, the person avoids performing compulsive behaviors (“response prevention”) for increasingly longer periods of time.

Through repeated exposures, individuals with OCD realize that anxiety increases temporarily, peaks and then decreases when they avoid performing compulsions.

In cases where creating the actual situation that triggers a compulsion is impossible, therapists can use imagined exposures, visualizations and recordings that can effectively increase anxiety levels for ERP exercises.

shrinks until it is barely noticeable or actually fades entirely.  The person then takes on more challenging exposures until they, too, become manageable.  Effective ERP leads to “habituation,” which means that people learn nothing bad happens when they stop performing compulsive rituals.

Cognitive Therapy, the second technique involved in CBT, helps an individual identify and modify patterns of thought that cause anxiety, distress or negative behavior.  In other words, CT helps patients understand that the brain is sending “error” messages.  Through Cognitive Therapy, the person learns to recognize these errors and confront the obsessions by responding to them in new ways.

For example, a new mother may have the thought, “Could I possibly harm my baby with a knife?”  Most people would easily dismiss this thought with something like “That’s a strange thought; where did that come from?”  But some people hold fast to certain beliefs, such as the belief that thoughts are always important, or that having a thought is morally equivalent to actually doing it.  Therefore, a mother with OCD may react to the thought of harming her baby by thinking “I’m a horrible mother for having such a thought! What’s wrong with me to think like that?”  Research shows that attempting to control one’s thoughts – or believing that a person should be able to control his or her thoughts – actually leads to more horrific images and frightening or repugnant thoughts.

Using Cognitive Therapy, the mother with OCD might be asked to challenge her thoughts and taught more suitable alternatives to her current ways of thinking: “I’ve been around many babies before, and I have never hurt any of them.”  Strategies such as self-talk, learning to separate oneself from the disorder, and analyzing the realistic chances or probability of a catastrophe's occurrence are also part of Cognitive Therapy.

Most CBT treatment is conducted on an outpatient basis once a week with “homework” consisting of daily exposures to be completed between therapy sessions.  In severe cases, people may require more frequent sessions or even residential treatment. 

This treatment may be deemed unusual – something that couldn’t really work.  But with the right therapist and sufficient time and support, Cognitive Behavior Therapy has helped thousands of people control their OCD.  In fact, some studies show that more than 85 percent of the people who complete a course of CBT experience a significant reduction in OCD symptoms.

CBT is the only form of behavior therapy strongly supported by research for the treatment of OCD.  Therefore, it’s extremely important to find a trained cognitive behavior therapist experienced in treating OCD – usually a psychologist with a Ph.D., Psy.D., M.A. or M.S. degree, or a specially trained social worker.  Beyond OCD can provide information about how to find a treatment provider.

Imagining life with more free time and without crippling anxiety helps many people with OCD stay motivated to stick with ERP until the end of treatment. Following therapy, people can look forward to returning to work or finding a better job, restarting an active social life, or taking up new hobbies to fill the hours that used to be consumed by obsessions and compulsions.

Metacognitive Therapy

With Metacognitive Therapy (MCT), people are taught to ignore their intrusive thoughts by learning to emotionally detach from the obsession and to observe the obsession without judgment.  MCT focuses upon changing a person’s perception of the significance of experiencing intrusive thoughts and the perceived need to react to those intrusive thoughts.  Recent preliminary studies support the use of MCT, but additional research must be conducted to support it as an effective and time-efficient treatment for OCD.

Learn about OCD Medication

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According to the most recent, large-scale community study of mental health in adults across the United States:

     - 1.2 % of the adults met full criteria for OCD in the 12 months prior to the study,

        and

     - 2.3% met the criteria for a diagnosis of OCD at some point in their lives – that’s over 5 million Americans, or approximately 1 in 40 adults.

Interestingly, the results of this study also indicated that more than one quarter of the adults experienced obsessions or compulsions at some time in their lives.  In other words, more than a fourth of the adults – over 60 million people – experienced OCD symptoms, even though they didn’t meet the formal criteria for a diagnosis of OCD.  This raises the possibility that the public health burden of OCD in the United States may be even greater than that suggested by the 1.2% and 2.3% figures above.

But OCD isn’t limited to the United States.  In fact, the World Health Organization has ranked OCD as one of the top 20 causes of illness-related disability, worldwide, for individuals between 15 and 44 years of age. Current estimates also suggest that approximately 1 in 100 children has OCD.

These estimates lead many to wonder how OCD could have grown from what was once considered a rare condition just a few decades ago to one of such widespread proportion today.  In the past, many OCD sufferers did not seek treatment, so the reported number of cases didn’t reflect the actual number.  And many people with the disorder have hidden the truth from everyone but their closest family members, for fear of exposure, gossip and shame.  In some cases, individuals with OCD have hidden their symptoms from everyone and suffered in silence.

Thanks to intensive efforts at educating the public, OCD has gained far more recognition than it once had.  But there is still a gap between those who need appropriate treatment for OCD and those who receive it.  The previously mentioned study of mental health in American adults indicated that severe cases of OCD are much more likely than moderate cases to come to the attention of mental health professionals.  Unfortunately, only a minority of severe cases receive treatment specifically for OCD. 

This study further indicated that among mental health disorders, OCD has the third highest proportion of seriously disabling cases, surpassed only by bipolar disorder and drug dependence.  In addition, many people with moderate OCD have impairments as severe as those found in severe cases of other mental disorders. 

Fortunately, effective treatment is available today, and people with OCD can get relief.  That’s good news not only for millions of people with OCD, but also for the millions of others whose lives are affected by OCD when a family member, spouse, friend or student has the disorder.

The first and most important step in getting appropriate treatment is to become knowledgeable about OCD and learn to recognize behaviors that may be associated with OCD.  This web site contains a wealth of information designed to help individuals better understand what OCD is and how it’s treated.  This web site also provides suggestions for locating a physician or mental health professional who is trained to treat OCD; not all clinicians are.

Learn about OCD treatment

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Disorders That May Co-exist with OCD

When two diagnoses occur in the same individual, they’re referred to as “comorbid” disorders.  According to the most recent, large-scale community study of mental health in adults across the United States, 90% of the adults who reported OCD at some point in their lives also had at least one other comorbid condition, including anxiety, mood, impulse control (AD/HD, oppositional-defiant), and substance use disorders.  A trained mental health professional can diagnose and provide appropriate treatment for these conditions as well as OCD.

Here are some of the disorders that are frequently comorbid with OCD:

ANXIETY DISORDERS.  OCD is classified as an anxiety disorder.  Other anxiety disorders include Generalized Anxiety Disorder, Post-Traumatic Stress Disorder, Panic Disorder (panic attacks), Social Anxiety Disorders and specific phobias such as fear of snakes or heights.  All of these disorders include symptoms such as excessive worrying and fear.  But because each disorder is different, symptoms can be quite varied.  (Source: Anxiety and Depression Association of America)

MOOD DISORDERS: MAJOR DEPRESSIVE DISORDER AND BIPOLAR DISORDER.  Symptoms of depression may include a persistent, sad, empty or hopeless mood, loss of interest in usually pleasurable activities (such as sports, hobbies, or sex), decreased energy, difficulty concentrating, insomnia or oversleeping, irritability, weight gain or loss, and thoughts of death or suicide.  Depression is more intense than a “bad mood” and lasts over two weeks.  Bipolar disorder is marked by extreme changes in mood, thought, energy and behavior.  (Source: Depression and Bipolar Support Alliance)

ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (AD/HD).  There are three types of AD/HD: (1) predominantly inattentive type; (2) predominantly hyperactive-impulsive type; and (3) combined type.  AD/HD can occur in both children and adults.  (Source: Children and Adults with Attention Deficit/Hyperactivity Disorder)

EATING DISORDERS.  Anorexia nervosa (self-starvation and excessive weight loss), bulimia (binge eating with compensatory behavior such as self-induced vomiting), and binge eating (recurrent overeating without compensatory behavior) are disorders that involve serious disturbances in eating behaviors.  Approximately 40% of people with eating disorders also have OCD.  (Source:  National Eating Disorders Association)

AUTISM SPECTRUM DISORDERS (ASDs).  People with ASDs have difficulties with communication, social interaction, and repetitive behaviors.  Individuals with Asperger’s syndrome (the mildest and highest-functioning form of ASDs) have obsessive areas of interest, but these bring them pleasure, unlike OCD obsessions, which produce distress. (Source:  National Institutes of Mental Health)

Obsessive-Compulsive Spectrum Disorders

A number of comorbid disorders share many similarities with OCD and are referred to as  Obsessive-Compulsive Spectrum Disorders.  These conditions should also be treated by a qualified mental health therapist.  They include:

TOURETTE SYNDROME (TS) OR TIC DISORDERS.  Tics are sudden, rapid, involuntary and recurring motor movements (such as blinking, shrugging shoulders) or vocalizations (such as sniffing or humming).  TS involves both motor and vocal tics for more than a year.  Symptoms occur prior to 18 years of age.  (Source: Tourette Syndrome Association of America) 

BODY DYSMORPHIC DISORDER.  People with Body Dysmorphic Disorder (BDD) have a preoccupation with their appearance – specifically an imagined or exaggerated defect in their appearance.  They may think of themselves as ugly and are often obsessed with a perceived flaw, such as a facial feature.  They have difficulty controlling negative thoughts about how they look, even when others believe the person looks fine.  (Source: Mayo Clinic).

TRICHOTILLOMANIA, SKIN-PICKING and NAIL BITING.  Compulsive hair-pulling (“Trich”), skin-picking, and nail biting are considered body-focused repetitive behaviors.  Signs of these conditions (respectively) include noticeable hair loss as a result of pulling hair out by the roots; noticeable (or hidden) scars, sores or scabs; and nails that are bitten so they are uneven and no nail extension is present.  (Source: Trichotillomania Learning Center).

Learn about OCD symptoms

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People who have OCD didn’t do something to cause it.  And it isn’t caused by the way parents talk with their children or don’t talk with them.  It’s not caused by how children are disciplined or not disciplined or how they were toilet-trained.  It doesn’t matter if both parents work, if mom is a stay-at-home mom or if the parents are divorced or remarry.  Even the worst parenting in the world doesn’t cause OCD.  OCD is a neurobiological disorder, not a condition that is caused by action or inaction.

However, if a person is genetically predisposed to OCD or has a subclinical case of OCD, a stress “trigger” or trauma may precipitate symptoms.  For someone who already has OCD, stress or a transition may worsen symptoms.

Here are some common misperceptions about the cause of OCD:

• STRESS. Stress doesn’t cause OCD, although symptoms sometimes begin after a severe trauma, such as the death of a loved one.  Other stress triggers include the birth of a sibling, a marriage or divorce, a move to a new home or new community, a transition to a new school or new school year, or even a natural disaster, such as an earthquake or tornado.  And if OCD symptoms are already present, stress can worsen those symptoms.  Anxiety, fatigue and illness – even the stress associated with positive events, such as holidays and vacations – can affect OCD.
• ILLNESS. Childhood illnesses do not cause OCD, although there is growing evidence that severe bacterial or viral infections such as strep throat or the flu may trigger the sudden onset of symptoms in children who are genetically predisposed to OCD.
• PARENTING. As previously indicated, there is no evidence that the way parents guide or discipline their children causes OCD.  Parents should not be blamed when a child exhibits symptoms of this disorder.
• FAMILY ACCOMMODATIONS. Although family problems don't cause OCD, families may unintentionally have an impact on the maintenance of OCD symptoms.  To decrease the distress a person with OCD experiences, family members frequently accommodate OCD behaviors.  For example, they may provide verbal reassurance when the person requests it, conduct rituals with or for the person or provide items he or she needs to carry out rituals, such as soap for hand washing.  Although they usually mean well, family members may actually be enabling the individual with OCD, and symptoms worsen, rather than improve.  OCD symptoms may also worsen if family members react to a person’s rituals with criticism or hostility.  Family members need to develop special skills to help their loved one overcome and manage the disorder.

Beyond OCD’s guide, How to Help Your Child, is a good source of advice, and Beyond OCD can help parents find effective treatment for their child.

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What Doesn’t Cause OCD

Everyone experiences intrusive, random and strange thoughts. Most people are able to dismiss them from consciousness and move on.  But these random thoughts get “stuck” in the brains of individuals with OCD; they’re like the brain’s junk mail.  Most people have a spam filter and can simply ignore incoming junk mail.  But having OCD is like having a spam filter that has stopped working – the junk mail just keeps coming, and it won’t  stop.  Soon, the amount of junk mail exceeds the important mail, and the person with OCD becomes overwhelmed.  So why does the brain of individuals with OCD work this way? In other words, what causes OCD?

Using neuroimaging technologies in which pictures of the brain and its functioning are taken, researchers have been able to demonstrate that certain areas of the brain function differently in people with OCD compared with those who don’t.  Research findings suggest that OCD symptoms may involve communication errors among different parts of the brain, including the orbitofrontal cortex, the anterior cingulate cortex (both in the front of the brain), the striatum, and the thalamus (deeper parts of the brain).  Abnormalities in neurotransmitter systems – chemicals such serotonin, dopamine, glutamate (and possibly others) that send messages between brain cells – are also involved in the disorder.

Although it has been established that OCD has a neurobiological basis, research has been unable to point to any definitive cause or causes of OCD.  It is believed that OCD likely is the result of a combination of neurobiological, genetic, behavioral, cognitive, and environmental factors that trigger the disorder in a specific individual at a particular point in time.  Following is a discussion of how those factors may play a role in the onset of OCD.

A study funded by the National Institutes of Health examined DNA, and the results suggest that OCD and certain related psychiatric disorders may be associated with an uncommon mutation of the human serotonin transporter gene (hSERT).  People with severe OCD symptoms may have a second variation in the same gene.  Other research points to a possible genetic component, as well.  About 25% of OCD sufferers have an immediate family member with the disorder.  In addition, twin studies have indicated that if one twin has OCD, the other is more likely to have OCD when the twins are identical, rather than fraternal.  Overall, studies of twins with OCD estimate that genetics contributes approximately 45-65% of the risk for developing the disorder. 

A number of other factors may play a role in the onset of OCD, including behavioral, cognitive, and environmental factors.  Learning theorists, for example, suggest that behavioral conditioning may contribute to the development and maintenance of obsessions and compulsions.  More specifically, they believe that compulsions are actually learned responses that help an individual reduce or prevent anxiety or discomfort associated with obsessions or urges.  An individual who experiences an intrusive obsession regarding germs, for example, may engage in hand washing to reduce the anxiety triggered by the obsession.  Because this washing ritual temporarily reduces the anxiety, the probability that the individual will engage in hand washing when a contamination fear occurs in the future is increased.  As a result, compulsive behavior not only persists but actually becomes excessive.

Many cognitive theorists believe that individuals with OCD have faulty or dysfunctional beliefs, and that it is their misinterpretation of intrusive thoughts that leads to the creation of obsessions and compulsions.  According to the cognitive model of OCD, everyone experiences intrusive thoughts.  People with OCD, however, misinterpret these thoughts as being very important, personally significant, revealing about one’s character, or having catastrophic consequences.  The repeated misinterpretation of intrusive thoughts leads to the development of obsessions.  Because the obsessions are so distressing, the individual engages in compulsive behavior to try to resist, block, or neutralize them.

The Obsessive-Compulsive Cognitions Working Group, an international group of researchers who have proposed that the onset and maintenance of OCD are associated with maladaptive interpretations of cognitive intrusions, has identified six types of dysfunctional beliefs associated with OCD:

1.  Inflated responsibility: a belief that one has the ability to cause and/or is responsible for preventing negative outcomes;

2.  Overimportance of thoughts (also known as thought-action fusion): the belief that having a bad thought can influence the probability of the occurrence of a negative event or that having a bad thought (e.g., about doing something) is morally equivalent to actually doing it;

3.  Control of thoughts: A belief that it is both essential and possible to have total control over one’s own thoughts;

4.  Overestimation of threat: a belief that negative events are very probable and that they will be particularly bad;

5.  Perfectionism: a belief that one cannot make mistakes and that imperfection is unacceptable; and

6.  Intolerance for uncertainty: a belief that it is essential and possible to know, without a doubt, that negative events won’t happen.

Environmental factors may also contribute to the onset of OCD.  For example, traumatic brain injuries have been associated with the onset of OCD, which provides further evidence of a connection between brain function impairment and OCD.  And some children begin to exhibit sudden-onset OCD symptoms after a severe bacterial or viral infection such as strep throat or the flu.  Studies suggest the infection doesn’t actually cause OCD, but triggers symptoms in children who are genetically predisposed to the disorder.

Stress and parenting styles are environmental factors that have been blamed for causing OCD.  But no research has ever shown that stress or the way a person interacted with his or her parents during childhood causes OCD.  Stress can, however, be a factor in triggering OCD in someone who is predisposed to it, and OCD symptoms can worsen in times of severe stress.

In sum, although the definitive cause or causes of OCD have not yet been identified, research continually produces new evidence that hopefully will lead to more answers.  It is likely, however, that a delicate interplay between various risk factors over time is responsible for the onset and maintenance of OCD.

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As education and public awareness about OCD have grown, so has the use of the term “OCD” as a description of some kinds of behaviors that are not OCD.

When people use the terms “obsessed,” “obsessive” and “compulsive” incorrectly, it leads to misunderstanding about OCD.  It’s not unusual not hear someone say, “That person (or child) must have OCD” when describing someone who is preoccupied with orderliness, has a strong interest in a subject or frequently performs the same activity (e.g., washes the kitchen floor every day).

Obsessive Compulsive Personality Disorder (OCPD) - Easily Confused With OCD

Obsessive Compulsive Personality Disorder is sometimes mistaken for OCD.  While the names are confusingly similar, the disorders are quite different.  OCD is an anxiety disorder, whereas OCPD is a personality disorder.

Usually identified in early adulthood, OCPD involves a preoccupation with orderliness, perfectionism and control in virtually every part of an individual’s life.  People with OCPD may spend an extraordinary amount of time cleaning their homes because they want them to be immaculate.  They may keep their closets extremely orderly and aligned and may become annoyed if their orderliness is disturbed.  Rather than being anxious about this, however, they see their behavior and thoughts as being OK.

Others may find OCPD behavior “odd” or extremely frustrating.  In fact, OCPD may interfere with a person's social relationships.  But it’s not OCD.  Individuals with OCPD like the world the way they shape it.  By contrast, people with OCD don’t like what’s happening to them and are overwhelmed by the thoughts and fears that invade their minds.  They want the obsessive thoughts, doubts, and urges that cause them to perform compulsions to stop, but they don’t know how to silence “the monster” in their heads.

Age-Appropriate Routines and Games

It’s important to note that most, if not all, children display developmentally normal repetitive behaviors or routines.  Superstitions, ritualistic games, and repetitive play are characteristic of normal child development.  In fact, many childhood behaviors enhance socialization and advance development.  These activities are not indicative of OCD.  The examples below illustrate the difference between normal childhood habits and OCD behavior:

• Morning or evening routines or rituals:  Younger children frequently follow certain routines, which may involve their parents' participation.  They may want to get dressed in the morning in a specific sequence (shirt first, then pants, then socks) or eat breakfast in a certain order (a spoon of cereal followed by a sip of juice until the breakfast is completed).  They may also want a parent to read them a particular story over and over, or sing a particular song at bedtime.  These activities are comforting to the child and, as long as they’re age-appropriate, usually aren’t a cause for concern.
  
  However, a 14-year old is exhibiting worrisome behavior if he or she still feels compelled to perform these routines or rituals in order to get dressed, eat breakfast or go to sleep at night; becomes highly agitated if the routine is interrupted or changed; and is unable to stop performing the routine. 

• Childhood games:  Children frequently engage in repetitive games or songs.  For example, youngsters who enjoy playing the game “Step on a crack and break your mother’s back” and avoid walking on cracks are exhibiting normal development.
  
  By contrast, a child who has OCD might not be able to engage in this game, believing that, by stepping on a crack, he or she could cause serious harm to his or her mother.  As a result, the child would find this activity very distressing.

Other Non-OCD Behaviors

OCD does not include having a desire to collect items or being drawn to a particular area of interest such as stamps, coins, antiques, books by a favorite author or even science fiction fantasy or cartoon memorabilia.  Collectors derive pleasure from the hunt for items they’re interested in, and enjoy talking about their collections or showing them to others. 

Similarly, sports enthusiasts may talk about their favorite sport or recite a litany of sports statistics.  Normal, age-appropriate interests in a subject do not indicate the presence of OCD.

In older children, teens and adults, OCD is not characterized by fans who are reportedly “obsessed” with celebrities, including television or movie stars, popular singers or professional sports team members.

Children or teens who have a “crush” on another person (especially a celebrity) do not have the crush because of OCD – even if they seem to be “obsessed” with wanting to read every magazine article about their “idol,” collecting fan memorabilia, participating in Twitter and online blogs and wanting to buy every CD, MP3, DVD or video download of their favorite personality. 

It’s important to understand that popular magazines sometimes lead to misconceptions about OCD.  Criminal and violent behavior may be labeled "obsessive" and/or "compulsive."  Articles presenting information on stalkers may refer to these individuals as "obsessed."  Such portrayals can lead to inaccurate and sometimes disturbing conceptions of what people with OCD are like. 

In addition, OCD is not characterized by compulsive lying, shopping, gambling or other behaviors that reflect difficulties with impulse control.  People with these problems may suffer from treatable mental illnesses, but they do not have OCD.

Finally, it’s important to distinguish OCD from the unusual patterns of interest exhibited by individuals with autism spectrum disorder, who have an all-encompassing preoccupation with a narrow, restricted interest that is either abnormal in intensity or focus.

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How to Recognize OCD

Virtually everyone has experienced worries, doubts or fears at one time or another. It’s natural to worry about life issues such as one’s health or the well-being of a loved one, paying bills or what the future will bring.  Everyone has also an occasional intrusive thought; it’s not even abnormal if a person has had an intrusive “bad” thought.  That’s not OCD.

What OCD Isn't

OCD is diagnosed when obsessions and compulsions

• Consume excessive amounts of time (an hour or more each day)
• Cause significant distress
• Interfere with daily functioning at work or school, or with social activities, family relationships and/or normal routines.

OCD is characterized by obsessive thoughts, impulses, or images and compulsions (overt or mental rituals) that are difficult to suppress and take a considerable amount of time and energy away from living life, enjoying family and friends or even doing one’s job or school work.

When OCD symptoms are present, it’s important to consult a mental health professional who is knowledgeable about OCD for evaluation and treatment.

What are the Symptoms of OCD?

In some cases, compulsions are shaped by the nature of the obsessions. Compulsive washing, for example, is commonly performed in response to obsessive fears of contamination.  Similarly, a fear of the house burning down may lead to excessive checking of the stove, oven and iron.  

In other cases, obsessions and compulsions are paired in a way that defies explanation; the compulsive behavior is completely unrelated to the obsession.  For example, a business man may feel compelled to tap his desk multiple times to prevent harm from coming to his family while he is at work..

It’s important to note that some people with OCD perform rituals not in response to a distinct obsession or fear but rather in response to certain sensory phenomena. Visual, auditory or tactile sensations may trigger a need for something to look, sound, or feel “just right.”  Upon seeing a tile floor, for example, a person may experience a need to trace over each of the tiles mentally in a symmetrical fashion.

In other cases, external triggers are absent, but the individual has an inner feeling and/or perception of discomfort that causes him or her to repeat a behavior until the feeling is relieved; the behavior needs to be repeated until it feels “just right” or “complete.”  In still other situations, repeating behavior is preceded neither by obsessions nor sensations  but rather by a need or urge.

Below are some examples of the more common OCD symptoms.  Obsessions are shown in italics, and rituals that are frequently associated with those obsessions are listed beneath them.

Fears of germs or contamination

• Repeatedly washing hands, using anti-bacterial wipes or hand-sanitizer
• “Protecting” what is perceived as “clean” space – personal desk or locker, other personal property
• Seeking reassurance from someone in the environment that others aren’t “sick” or “dirty”
• Avoiding touching “dirty” surfaces that others may have touched, including  common-area objects such as doorknobs, desks, shared supplies, computer keyboards, soap, cafeteria trays, etc.
• Avoiding contact play or sports – either because of a fear of catching a disease or fear of contaminating others
• Avoiding the use of public washrooms
• Refusing to share items or supplies with others
• Refusing to eat in a cafeteria
• Avoiding certain products or surfaces because they may contain “poison” (for example, cleaning chemicals)

Fears that harm, illness, or death, will befall oneself or others; fear of causing harm to oneself or others, including violent or aggressive obsessions (fear of killing or injuring oneself or another person; fear of molesting a child)

Note: Individuals with OCD who have violent/aggressive thoughts neither have a history of violence nor act upon these urges or ideas.

• “Checking” behavior, such as  making sure doors and/or windows are locked; checking to be sure that oven, stove, coffee pot, iron, curling iron are off
• Checking light switches or turning them on and off repeatedly
• Repeatedly checking to see if a child is still breathing during the night
• Reading a paragraph over and over again to prevent harm from coming to a loved one, pet, etc.
• Seeking reassurance from someone in the environment that the person (with OCD) is “safe”
• Avoiding leaving a “safe” zone (such as a cubicle, classroom); avoiding going into certain "unsafe" zones (for example, for lunch or recess areas)
• Avoiding open spaces, such as a gymnasium
• Unreasonable avoidance of colleagues or peers, for fear of causing them harm

Fears/feelings/urges related to numbers, e.g., "good" numbers, "bad" numbers, "magical" numbers    

• “Counting” behavior such as counting, touching or saying words a certain number of times (believing there is a magical significance to certain numbers and, for example, using those numbers to “magically” keep harm from coming to another); counting the number of steps between locations and having to start over if interrupted
• Touching objects a certain number of times; not being able to move on unless this touching has been accomplished
• Reading words or pages a certain number of times, causing delays in completing work, assignments
• Going back and forth through doorways a certain number of times before it’s OK to enter the room
• Avoiding using certain numbers that are "unlucky" or "not safe"; only using numbers that are "safe" or "lucky."

Fears/feelings/urges related to discarding something (e.g., fears that something bad will happen or feelings of incompleteness if something is thrown away); fears of contamination that prevent an individual from touching an item; need to buy items in multiples of a particular number (OCD-based hoarding)

• Saving useless items – scraps of paper, candy wrappers, bottle caps, broken items; being unable to part with things that are not needed any more
• Holding on to items for fear that they might be needed sometime in the future, such as books, newspapers, food, school papers; wanting multiples of the same item (e.g., buying in multiples of 3 because it's a person’s magic number)
• Holding on to what is “my” book, pencil, desk, chair, etc., and getting overly upset if another person uses, borrows or touches one’s possessions
• Accumulating items or objects in a particular area (e.g., desk drawer) because they are contaminated

Excessive fear of violating religious or moral rules (scrupulosity)

• Apologizing or confessing that something was (or is thought to have been) wrong, such as breaking rules, including religious, office, classroom rules
• Constantly seeking reassurance that a task has been completed right or perfectly; seeking affirmation that a mistake was not made
• Saying prayers a certain number of times; excessive praying to atone for being “bad”; repeatedly confessing perceived “sins” or bad behavior
• Repetitive praying or confessing to neutralize or “undo” bad thoughts, intrusive sexual thoughts, or visions of acting badly, including cursing or blaspheming at work, school or church
• Avoiding answering questions for fear of telling a lie

Fears/feelings/urges related to symmetry or order

• Constantly “evening up” items or groups of items, such as books on a shelf or items on a desk; aligning edges to be “just right” or “even”
• Rearranging items to be in a certain order, for example, by color or alphabetical order
• Avoiding a particular room with square tiles (e.g., bathroom); seeing the tiles would necessitate tracing each of the edges with the eyes

Fears/feelings/urges/images related to sexual content

• Doubting one’s sexual orientation, even though there is no evidence to support this concern
• Excessive praying to atone for having inappropriate sexual thoughts or images
• Avoiding TV, magazines, books, DVDs, etc., for fear of seeing something sexually-related

Excessive doubting/dread of uncertainty

• Constantly rechecking to see if everything that should be in a brief case, backpack is actually there
• Leaving one’s work area to check something, e.g., to check that a car in a parking lot is actually locked
• Avoiding a school locker to prevent having to check the lock over and over again

Fears/feelings/urges related to having something "just right," "just so" or "perfect"

• Getting up and sitting down repeatedly at a desk, until the "just right" feeling has been achieved
• Repeatedly revising the way letters, words, numbers, or one's name is written to make them look "just right"; getting "stuck" writing the same letter or word over and over again
• Erasing words and rewriting over and over – sometimes until holes are rubbed in the paper
• Extreme slowness with work or school activities – making sure that everything looks "just right" or is done "just right," possibly in a certain order or pattern
• Repeating various actions over and over for no apparent reason
• Avoiding a hallway in which one must walk repeatedly until it feels "just right"

Symptoms of OCD vary widely, depending upon the individual and the situation. Adults and children experience many symptoms other than those mentioned above.  Interestingly, the majority of people with OCD are able to function reasonably well, and friends or co-workers may not even suspect there’s a problem.  But when symptoms escalate to the point that they interfere with functioning – excessive time is lost from work, an individual is unable to work, a student who normally receives good grades in school suddenly receives poor grades, uncontrollable fear and anxiety are severely straining a relationship – it’s time to get help.

Postpartum OCD (PPOCD)

Over the years, the condition experienced by many new mothers known as post-partum depression has received increased attention.  Perhaps not as widely recognized, however, is that although reported figures vary, an estimated two to three percent of new mothers develop postpartum OCD (PPOCD).  With this disorder, a woman may have obsessive intrusive thoughts about her baby’s safety.  Symptoms include:

• Excessively washing or sterilizing baby bottles
• Excessively washing baby clothing, or washing other family members’ clothing repeatedly
• Isolating the baby to keep family members or others from “contaminating” the baby
• Constantly checking on the baby
• Experiencing persistent and terrifying fears of harming the baby

Everyone from family members to friends expects a new mother to be joyful.  But society doesn’t realize that PPOCD can leave a new mother feeling devastated and exhausted.  Untreated PPOCD can have a negative impact a mother’s ability to care for her child and severely strain her marriage, friendships and other relationships.

Effective individualized treatment for both post-partum depression and PPOCD (which frequently occur together) is available, and can enable a new mom to manage her symptoms.  As with other types of OCD, postpartum OCD usually responds to medications (serotonin reuptake inhibitors) and cognitive-behavioral therapy (CBT).  Although serotonin reuptake inhibitors are effective treatments for OCD, their risks to the unborn and breast-feeding child are not yet well known.  Many experts believe these medications probably pose no danger, but it’s important to discuss the possible risks with a doctor on an individual basis.  A safer, yet more challenging treatment approach, is CBT, which has been demonstrated to be more effective than medications for non-postpartum OCD.

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In a world of social networking sites such as Facebook, Twitter, LinkedIn and Pinterest, blogs on every topic imaginable, forwarded emails, “googling” for information about people, and personal YouTube videos just a click away, it sometimes seems that everyone’s life is exposed for all to see.  But many people prefer to be more private when it comes to OCD.

If you’re one of those people, and you’re struggling with whether to tell family and friends about your OCD, here are some things to consider. 

First, family members are a kind of natural support system.  Chances are they’ve noticed changes in your behavior or already realize something is wrong, even if they haven’t said anything to you about it.  Because OCD often has a genetic basis, your parents may even know other family members who have symptoms of OCD.  And because they care about you, they’ll probably be relieved to know you’re getting help and may want to help you in any way they can.  Parents may be able to offer financial assistance, for example, if treatment is available only through a therapist in private practice. 

Second, it can be important to have a network of friends who know about your OCD.  For example, it may be advisable to tell close friends and other people you trust so they’ll understand your OCD behavior.  If you do ERP homework in your dorm, you’ll also need to tell your roommate.  Like family members, friends and roommates may also be part of your support system.  They may serve as “coaches” to encourage you to complete your ERP homework and celebrate your victories over OCD.  They may also be much-needed confidants who encourage and motivate you when the going gets tough.

Telling others about your OCD is an individual decision that varies from person to person.  Your therapist can help you decide whom to tell and how to tell them.  It may be helpful to provide friends and family accurate information about OCD by showing them this brochure or the link to Beyond OCD.

The following books are also excellent sources of information for family members:

• Loving Someone with OCD: Help for You and Your Family by Karen J. Landsman, Kathleen M. Rupertus and Cherry Pedrick
• Obsessive Compulsive Disorder: New Help for the Family (Second Edition) by Herbert L.Gravitz

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Of course you have questions about OCD.  We hope this web site gives you information and insight to help you learn about this disorder and how to get better if you are currently suffering with OCD.

Here are some of the most frequently asked OCD questions by college students:

• What causes OCD?
• Can stress cause OCD?
• Why can’t a person just stop their OCD?
• Is there an online test I can take to see if I have OCD?
• What’s the best treatment for OCD?
• Can you guarantee I’ll get better with treatment?
• Do I have to be hospitalized to treat my OCD?
• What if I don’t get treatment for my OCD?
• My college “doesn’t treat OCD”. Now What Can I Do?
• What are my options if my school offers CBT but limits the number of visits?
• Should I change schools to get OCD treatment?
• Should I take a leave of absence to get treatment?
• Are there accommodations available through disabilities services?
• Should I tell my family I have OCD?

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OCD at College - Campus OCD Tales

"I couldn't wait to be on my own at college—and then I was miserable. I'm so lucky to have gotten OCD treatment so I can be happy again."

OCD can complicate your life. At college, it can really get in the way of classes and studying, your social life and even living with your roommates. You want to be thinking about exams and the future -- or that cute someone who sits next to you in English Lit. But you can’t stop the constant doubts and fears that OCD puts in your brain, and it can get to the point where that’s all you think about.

Maybe you can relate to the situations described here -- some examples of how OCD can affect the college experience. Fortunately, getting the right kind of treatment (Cognitive Behavior Therapy, or CBT) can make all the difference -- and give you a roadmap to relief.

At home I had my own bathroom, but at school I had to share one with three other people. I got very upset with the thought of their germs getting on my towels and all my things. I bought bleach and spent so much time washing everything that I didn’t have time to study or have a social life, or even sleep. Finally, someone at the student health center referred me to a cognitive behavior therapist. I’m so much better now.

I used to avoid places. I couldn’t take classes in certain buildings or visit friends in certain dorms because all these fears would come over me. My world was closing in. I kept associating more and more places with what I now know are obsessions or doubts and fears. I knew it didn’t make any sense, but the anxiety was just crushing. On the outside I looked fine, but my OCD was taking over inside. Thanks to CBT, those days are over.

I kept thinking a bunch of disgusting thoughts. I didn’t want to think them, but I couldn’t help it. They scared me and I was afraid to tell anyone for a long time because I thought they’d think I was crazy. I got so afraid I would do some of the things I kept thinking about that I finally broke down and confided in a therapist at the student health center. He told me I wasn’t crazy. He said it’s a common form of OCD called “intrusive thoughts” -- and he’s actually treated others with this same disorder.

When I was in high school, my parents were there to help me check the locks at night and make sure no one was breaking in. I probably asked them if the locks were OK ten times an hour. At college I couldn’t handle it all by myself. I was terrified and didn’t have anyone to help me until I went to the counseling office and they found me a clinic where CBT was offered.

"I had to write certain words over and over again until they looked RIGHT - sometimes I erased so much that I tore holes in the blue books."

Every time I had to take an exam, it triggered this intense anxiety. I kept having to write certain words over and over again until they looked right -- sometimes I erased so much that I tore holes in the blue books. It was frustrating and embarrassing and it got to the point where I almost never finished answering the questions (essay questions were the worst). My grades nose-dived. It was such a relief to find out this problem had a name and could be treated.

I’ve always been kind of religious. Then I started getting these thoughts...bad thoughts about God and sex and violence. It was horrible, but the thoughts wouldn’t go away and kept getting worse and more often. I prayed hard and started thinking if I could say the prayers in this certain way it would make up for the bad thoughts, but if I got interrupted I had to start over again to get it in the right order. I finally confided in a friend at Campus Ministry. She told me about a kind of OCD called “Scrupulosity” and urged me to talk with someone at student health. When I finally did, I was referred to a cognitive behavior therapist in town. He worked with my religious advisor to help me through the next couple of months. Now that I’m better, my faith makes me feel good again, rather than afraid.

"How can you eat in the cafeteria when you know how dirty everything is?"

I hate germs. I tried not to think about it, but over time, it got to where I was almost paralyzed with fear of germs. I couldn’t stand it when somebody sneezed near me. I think I kept the company that makes those anti-bacterial wipes in business with all the wipes I bought. Taking the bus got to be just horrible. I had to get off and get away from all the germs, especially on the seats and door handles. And showering? That could take hours. I couldn’t use the bathroom in any of the classroom buildings. I didn’t even want to go to class anymore -- the desks were so “filthy”. And how can you eat in the cafeteria when you “know” how dirty everything is? I finally looked online for some information about fear of germs because I didn’t know anybody else who was in the anguish I was in. It sure sounded like I had OCD. My parents were very supportive and have helped me get treatment. It’s not easy, but it’s working.

I wanted a single room. When I moved in, something happened. I got scared at night and checked the door lock and the window and alarm clock over and over for hours. I got no sleep after a while. I was so thankful when morning came because I wasn’t so afraid anymore. But I was too tired to pay attention in class. I thought maybe I had ADD or insomnia. But I was diagnosed with OCD. Thanks to CBT, now I can go to bed at night and sleep. I don’t have to go into hyper-security-checking mode anymore. I waited so long to be “on my own” at college, and then I was miserable. I’m so lucky to have gotten OCD treatment so I can be happy again.

I’m a biochem major. Every time I worked in the lab I was worried (no, make that terrified) about leaving traces of chemicals around that could hurt somebody. I called the risk management office to warn them -- a lot. I know they got sick of me calling. I just wanted some reassurance that nobody was going to die because of the chemicals I might have left out. Luckily...someone there suggested I visit the counseling center. The doctor diagnosed me with OCD. Once I knew what was happening to me, I was able to get the right help.

With my parents not around to stop me, my eating and exercising got way out of line. It turns out I had both OCD and an eating disorder. Now I’m getting treatment for both.

My roommate and I didn’t get along because she was such a slob. I wanted everything to be neat and she didn’t care. At first it was just me straightening up the room a lot, but it got worse second semester. I felt like I HAD to do it -- all the time. Everything in the closet had to be arranged exactly this one way. Same for my desk, and I started rearranging her stuff on her desk. We had these screaming fights over it. Once I just blurted out what I was so terrified of -- that if it wasn’t arranged exactly like I had it, the dorm would blow up. Right then she convinced me to see a counselor and dragged me there (to the campus health center). I’m not going to say CBT is easy, but I don’t want to go back to the way I was so I’m sticking with it.

If I could give you one piece of advice, it would be to not wait if you think you have OCD. I wasted nearly a year before things got so bad I almost flunked out. It was like I was majoring in OCD instead of theater. Get into cognitive behavior therapy as soon as you can. OCD can’t go away by itself.

Before I got CBT, I was obsessed with filling in those little circles perfectly every time I took an exam. It took me forever to mark each circle. Sometimes I didn’t get beyond my name and the first few questions before time was up. I knew the material, but my OCD was making me fail my classes. My parents and professors didn’t know what was happening to me, and neither did I. I was flunking, but I’m smart. It wasn’t fair. When I finally talked to a counselor, I learned about OCD and found out there really is a treatment.

I shared an apartment with two other girls and they were OK for a while. But one of them refused to throw anything away. She kept everything. She had boxes of stuff in her bedroom and stacks of papers and magazines and junk mail. Paper bags, a broken dish, every gum wrapper. And the worst? She took stuff out of the garbage can. I caught her rinsing out those little paper containers the Chinese food is delivered in and keeping them in her closet. We were going to get mice or bugs and it was disgusting. I called a friend who told me to call the health service on campus about it. That was a good call because they thought it might be OCD and urged me to get my roommate to come by. She was real insulted when I brought it up, but she eventually agreed to talk to somebody there. Now every night she has these exposure therapy exercises to do at home, and she isn’t hoarding all that stuff anymore.

My brother was a freshman and I was a junior when he started washing his hands a lot. I didn’t even notice until I ran into him at a fraternity party and his hands were all cracked and bleeding. This was not like him at all. I talked with our Dad and he flew down to campus the next weekend to see us. My brother admitted he had a problem which we’ve learned is called “fear of contamination”. We weren’t able to get help at school, but there’s a psychologist in town who offers CBT and my brother is in treatment now. It really hurt to see my little bro so scared, but it felt good to help him get over it.

The last thing I wanted to hear was someone telling me there was something wrong with me. But there was. When I found out it was OCD at least it had a name. Then I was able to get treatment.

If you’re worried about somebody finding out you have OCD, like a company you want to work for in the future, you can relax. I found out that that it’s against the law for a college to disclose your medical history. They have to keep your information private. So if that was keeping you from going to a psychologist on campus for OCD therapy, don’t worry. Get the therapy. The OCD records are sealed.

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Identifying the symptoms of OCD can be the first step toward getting effective treatment and relief from OCD.  The OCD Self-Screening Test can give you insights into your thoughts and behaviors, but keep in mind that only a qualified mental health professional can make an actual diagnosis.

This test is the online version of the Florida Obsessive Compulsive Inventory (FOCI) and is designed to help identify some of the common symptoms of OCD.  Please remember that a high score on the questionnaire does not necessarily mean you have OCD.

The test is completely confidential. Your responses will not be recorded. The FOCI is a personal tool provided for your use only.

Take the test now.

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We all know that there are no guarantees in life.  What we do know, however, is that many of the most worthwhile achievements in life require a substantial commitment.  Participating in Cognitive Behavior Therapy (CBT) for your OCD is one of them.  When you begin CBT, your therapist will be very open and honest with you about the commitment you’ll need to make to be successful in overcoming your symptoms.

At first, the sessions with your therapist will be new, and you may be somewhat anxious.  But with careful guidance from your therapist, you should learn the ropes of CBT fairly quickly.  In the Exposure and Response Prevention (ERP) part of cognitive behavior therapy, you’ll be asked to confront your fears, doubts, disturbing thoughts or urges (exposure).  You’ll also be asked to refrain from performing your compulsions, or rituals, at least for a period of time (response prevention).  And there’s no sugar-coating it: this will be difficult.  But this is the only scientifically-supported method to help you to literally “reprogram” you brain and overcome your OCD symptoms.  Your therapist most likely will also use Cognitive Therapy, another component of CBT.  With Cognitive Therapy, you’ll learn to identify and modify patterns of thought that cause anxiety, distress or negative behavior.

You will also be given ERP “homework” exercises to do between sessions. It’s very important that you do all your homework and keep track of it, as per your therapist’s instructions.  You may have a number of reasons for not doing it: you were too tired, ran out of time, or were too upset.  But remember that whenever you don’t do your ERP homework, you’re only delaying your recovery.

Although you will experience anxiety when you participate in CBT, your therapist will teach you coping strategies for dealing with anxiety that you can use throughout treatment.  Also remember that when you do CBT, you’ll start with easier ERP exercises and gradually work your way through more difficult exercises.  Your therapist will never ask you to do an ERP exercise you’re not ready for.

To mentally prepare for treatment, it’s best to clear your life of as much stress as possible, eat well, get plenty of sleep, and enlist the support of family and friends.  If your treatment includes ERP exercises that you need to do in your dorm room, it’s important to tell your roommate so he or she will understand any “strange-looking” behavior.

To be successful at CBT, you need to:

• Attend all of your therapy sessions (don’t give in to the temptation of cancelling sessions!)
• Be completely open and honest with your therapist; nothing is “too terrible” to tell your therapist
• Do your therapy homework between sessions
• Give your therapist feedback about your progress.
• Keep going – even when it’s hard – to achieve the relief you deserve

Hard work?  Yes.  But worth it?  Absolutely!  Learning to manage OCD can be challenging, just like reaching many meaningful goals in life.  But people who seek the right treatment and stick with it find that the benefits far outweigh the effort.  Just imagine what it would feel like to get relief from your OCD symptoms.  Holding that vision in your head will remind you that there’s a wonderful reward for all your hard work.

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If Your College Limits the Number of CBT Therapy Sessions

If your college or university offers Cognitive Behavior Therapy through the student health center or counseling service, that’s a plus.  But if they limit the number of visits you can have, that can pose a challenge.  The usual treatment time for CBT is approximately 12 to 16 weekly sessions.  Some people with severe OCD require more frequent visits.  You may also require follow-up, or “booster,” sessions if your symptoms return or change – that’s normal.

If your school limits the number of in-person CBT therapy sessions you can attend, be sure to make the most of every session you do have.  First, be completely candid with your therapist about your fears and intrusive thoughts –  no matter how bad they may seem.  An experienced therapist won’t be surprised or think less of you because of  what you’re thinking.  In fact, it’s very likely that your therapist has already treated other people who had the kinds of obsessions you’re having – whether they’re violent, morbid or sexual.  Your therapist also knows that OCD is causing your obsessions; it’s not a character flaw or a weakness on your part.  And you certainly are not a bad person for having OCD.

Second, be sure to do all the exposure exercises your therapist prescribes between sessions.  Your ERP homework exercises will parallel your therapy sessions and will gradually increase in difficulty, giving you more challenging exposures as you progress.  It’s hard work, but you’ll get better faster if you do your homework and keep your therapist up to date on your successes and failures. 

If you are unable to learn to manage your OCD within the number of sessions provided by your school, you’ll need to work with a trained cognitive behavior therapist off campus.

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About Disability Accommodations

Most colleges and universities are required to offer accommodations to students with a disability (a physical or mental health problem that limits your major life activities) under Title II of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973   These laws, which protect students from discrimination on the basis of disability, require schools to provide accommodations to help “level the playing field” for students with disabilities.  Accommodations include extended time for tests, audio recordings of lectures and books, preferential seating and many others.

Some accommodations, such as extra time on tests, may work well for students with learning disabilities or AD/HD.  Keep in mind, however, that typical accommodations for other students may not be helpful for students with OCD.  Extra time on an exam, for example, may allow more time for ritualizing and actually intensify the OCD.  So it’s important that accommodations fit your needs.

Before seeking formal accommodations, which are typically provided through the disabilities office or Dean of Students, it might be beneficial to check into other services your school offers.  If your college or university has a learning skills center, for example, you may benefit from using their resources to acquire study skills, learn how to prepare for and take exams and figure out ways to decrease test anxiety.  Programs such as these are open to all students, and, therefore, do not represent official accommodations.

Many individuals believe that people with OCD should not seek special accommodations at school or in the workplace, suggesting that it will take longer to get relief from OCD if symptoms are accommodated.  And ultimately, your primary goal is to learn to manage your OCD so you can function productively in the real world, with all its triggers and stresses.  But if your grades are suffering because of your OCD, it can be extremely helpful to take advantage of some temporary accommodations that allow you to function in school while you get treatment.

To obtain disability accommodations at the college level, you will be required to provide documentation.  Some schools require more documentation than others.  In general, however, you must be prepared to get a written statement from a licensed/qualified professional documenting your disability and how it affects your capacity to participate in and benefit from the academic program.  The law requires that schools keep all information about a student’s disability confidential, and it does not become part of your permanent record at the school.

An individualized education program (IEP) or Section 504 plan, if you had one in high school, may help identify services that have been effective for you.  This generally is not sufficient documentation of a disability, however, because of the differences between postsecondary education and high school education.  What you need to meet the new demands of postsecondary education may be different from what worked for you in high school.  Also, the nature of a disability may change.  With OCD, for example, it’s common for symptoms to change over time.  Therefore, the types of accommodations that worked in the past may not be effective in college.

Although Section 504 and Title II of the Americans with Disabilities Act actually protect elementary, secondary, and postsecondary students from discrimination, several of the laws’ requirements that apply through high school are different from those that apply beyond high school.  For example, Section 504 requires school districts at the elementary and secondary level to provide a free appropriate public education (FAPE) to each child with a disability in the district’s jurisdiction. 

At the postsecondary level, however, schools are not required to provide FAPE; they are required to provide appropriate academic adjustments, as necessary, to ensure that they do not discriminate on the basis of disability.  In fact, one of the reasons accommodation requests at the college level are denied is that they go beyond the scope of “leveling the playing field” – or preventing discrimination – for students with disabilities.  Requests for accommodations may also be rejected if they: (1) lower or substantially modify essential requirements, (2) fundamentally alter the nature of a service, program, or activity, or (3) would result in an undue financial or administrative burden to the school.

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About Medical Leaves of Absence

If your coursework is suffering because of OCD, and you’re concerned about your grades, you may be thinking of taking a medical leave of absence from college so you can concentrate on treatment for OCD.

Many cognitive behavior therapists who treat college students with OCD encourage students to stay in school during treatment.  The main reason is that you need to be around the things that “trigger” your obsessions and compulsions.  If your OCD is triggered by cafeteria food, your dorm or apartment, roommates, or computerized exam forms, for example, you’ll need to deal with those issues where they occur. 

It’s a big decision to take a medical leave of absence.  You may have become familiar with your current surroundings, classes, professors and roommates.  A leave could mean that when you return, you could find yourself in a different dorm or apartment with different teachers, class times and classmates.  If you have a job on campus, it may not be available when you return from a leave.

But when OCD is very severe, a leave of absence may be warranted to allow you to focus on your recovery.  Enlist the support of your therapist and trusted family members to help you with this decision.  Before taking a leave of absence, check with the campus disability office to be sure you’ve considered accommodations that might help you remain at school.  For example, a student with a disability may be able to take a reduced load yet still be considered a full-time student.

If you have student loans, a scholarship, fellowship or other financial assistance, you should talk with your school’s financial aid office (or the entity that awarded you a private scholarship or grant) to advise them of your plans to take a leave of absence.  You’ll want to ensure that this assistance continues when you return from the leave.  If you have a student loan, make sure the leave of absence is recorded so your loan time is extended before you have to worry about making loan payments.  In addition, check with your school regarding policies for returning to school after a leave of absence.

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Should I Change Schools to Get Treatment for OCD?

Transferring to another school is obviously a major decision.  But if your OCD is severe, and you can’t find treatment nearby, you might consider looking for a school where treatment for OCD is available.  If you do, here are some points to consider:

• Is the school a good fit for you – academically and socially?  Does it offer a degree in the field you want to major in?  Is it larger or smaller than the school you attend now?  What is the diversity of the college population and the town/city in which it's located?  How close is it to home?
• Does the school provide the mental health services you need on campus or in the local community?
• Does it offer the disability support, such as academic accommodations you may need while you learn to manage your OCD?
• Are tuition fees and housing more expensive than your current school?  If you are on scholarship, is it transferable?  What kind of financial aid is available if you need it?

Some schools and programs offer on-campus treatment, accommodations, and/or support groups for OCD and other disorders.  Other schools offer flexible, nontraditional programs with online learning options.

Finding a good fit requires a lot of careful research.  Ask a trusted family member or friend to help you in your search.  Gather information by looking at web sites, calling school admissions offices and visiting campuses (if travel is possible).  Be sure to ask lots of questions at the counseling center, student health center and disabilities office.

Students who require extra support in academics, independent living skills and social skills due to a disorder or learning disability can get information through:

• The College Living Experience web site
• Books such as
  • K & W Guide to College Programs and Services for Students with Learning Disabilities or Ad/HD by Princeton Review, Marybeth Kravets, and Imy Wax
  • Preparing Students with Disabilities for College Success: A Practical Guide for Transition by Stan Shaw, Joseph Madaus, Lyman Dukes III, and James Martin

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OCD - General

• Don’t Be Afraid of the Word “Disorder”
• Getting The Right Treatment For An Obsessive-Compulsive Disorder
• How I Treat OCD
• Ten Things You Need To Know To Overcome OCD
• What Does Habituation Mean?
• What The Heck is “Obsessive Slowness?”
• Resilience in the Recession: Seven Strategies to Free Yourself from Negative Thinking
• Acceptance and OCD
• Self-Directed Treatment for OCD: The Irony of Doing the Opposite
• What if you can’t afford treatment?
• Is There a Relationship Between OCD and Social Anxiety Disorder/Phobia (SAD)?
• OCD and Thought-Action Fusion

OCD and Tourette Syndrome

• OCD and Tourette Syndrome: Re-examining the Relationship

Body Dysmorphic Disorder

• Behavioral Treatment of Body Dysmorphic Disorder

Contamination

• Stronger Than Dirt: OCD and Contamination
• WHEN EPIDEMICS COLLIDE: OCD AND AIDS

Compulsive Checking

• How Brad Overcame Compulsive Checking

Compulsive Hoarding

• How To Get Hoarders Into Treatment
• Saving The World
• Resisting the Desire to Acquire
• Animal Hoarding:  An Overlooked and Misunderstood Problem

Compulsive Touching and Movement

• A Touching Story

Eating Disorders

• OCD and Eating Disorders: Untangling the Diagnostic Web
• Relationship of Eating Disorders to OCD
• Orthorexia: When healthy eating goes astray

Family/Friends

• Families of OCD Sufferers Seldom Get The Help They Need: Why They Don’t and Why They Should
• Someone I Care About Is Not Dealing With His OCD: What Can I Do About It?
• You, Your Spouse and OCD: Three’s a Crowd
• Roadmap to Recovery: Families of Adult OCD Sufferers Living at Home

Harming and Morbid Obsessions

• How I Treat OCD Killer Thoughts: Treating Violent Obsessions
• “But I Love My Kids” (Parents Who Think About Harming Their Children)
• Treating Morbid Obsessions

Health Anxiety

• Hypochondriasis: What is it and How do you treat it?
• Vomit Phobia - Fear of Vomiting (Emetophobia)

Insurance

• Fight For Your Rights: Getting Your Insurance Company To Pay For OCD Treatment
• The ABC’s of OCD, Disability, and Treatment

Magical and Superstitious Obsessions

• Very Superstitious
• Your Number Is Up! (Magical Numbers and OCD)

Parents and Children

• Avoiding the Overprotection Trap: A Therapist’s Advice for Parents of Kids with OCD
• Being The Most Effective Parent: Strategies for Managing Your Feelings
• What Happened to My Child?  How To Manage and Overcome Bad Thought OCD
• Sudden and Severe Onset OCD - Practical Advice for Practitioners and Parents
• How To Manage Your Parents When You Have OCD: A Guide for Teens

Perfectionism

• Perfectionism: Are You Sure It Pays Off?
• The Search for Imperfection: Strategies for Coping with the Need to be Perfect
• How Clean is “Clean?”

Postpartum OCD

• Beyond the Blues: Postpartum OCD

"Pure" Obsessions

• Pure “O” - Fact or Fiction?
• OCD and Thought-Action Fusion

Relationship Obsessions

• Loves Me? Loves Me Not?
• When People Become Obsessed With Other People

Scrupulosity

• “Let He Who Is Without Sin:” OCD and Religion
• Scrupulosity: Blackmailed by OCD in the Name of God

Sensorimotor Obsessions

• When Automatic Bodily Processes Become Conscious: How to Disengage from “Sensorimotor Obsessions”
• Sensorimotor OCD Body-Focused Obsessions & Compulsions (Swallowing, Breathing) - Part 1
• OCD Core Fears Related to Body-Focused Obsessions & Compulsions - Part 2
• Treatment for Body-Focused Obsessions & Compulsions - Part 3

Sexual Orientation OCD (a.k.a. HOCD)

• Sexual Orientation OCD - Part 1: What is HOCD?
• Sexual Orientation OCD - Part 2: CBT for HOCD
• Sexual Orientation OCD - Part 3: HOCD Sub-Types
• Sexual Orientation OCD - Part 4: Challenges to Treatment of HOCD

Teens

• Jesse’s Really Bad Thoughts: A Teen With Morbid Obsessions
• The Boy Who Didn’t Know Who He Was (Teen Obsessions About Homosexuality)
• How To Manage Your Parents When You Have OCD: A Guide for Teens

Trichotillomania

• Cognitive Behavioral Treatment of Trichotillomania
• Some Advice for Significant Others
• You, Your Child, and Your Child’s Pulling