By Fred Penzel, Ph.D.
Having OCD definitely sucks! As if there isn’t enough to deal with in life. Getting well is hard work too. All this would be enough on your plate, if it weren’t for further problems that can come up when some people’s families get involved in their OCD too. Sure, they mean well, and they think they are helping, but a lot of times they don’t do the right thing because they just don’t really understand what it’s like. How could anybody understand something like OCD if they don’t actually have it?
Don’t get me wrong; not everyone’s family ends up adding to the problem, but it happens often enough that I decided to write this as a brief guide to help you if you have to deal with it. Families, as well as OCD sufferers, need to be educated.
Here are some ideas I hope will help you to do this. When you are upset with the way your family is reacting to your OCD, the worst things you can do are to get angry at them, or else pull into your shell and not talk to anyone about it. Either way, nothing will get solved. Perhaps you can show your family this article. Here is a list of some of the ways they can get it wrong and some understandings about them. Some of them may sound familiar to you. I call this list:
Common Mistakes Parents and Other Family Members Can Make
1. Their idea of helping you with compulsions is to say, “Why don’t you just stop?”
A lot of people think that the behaviors they see in OCD are just bad habits and that, with a little bit of willpower, you could simply choose to not do them any more. They may tell you to “Just stop,” or ask, “Why don’t you try thinking good thoughts instead?” They don’t seem to understand that this is a problem of brain chemistry, and not any kind of weakness on your part. It may even be genetic. While you can learn to stop doing compulsions, it takes a lot of effort over a period of time, usually with expert help. You don’t just throw OCD away like a pair of old sneakers. It needs to be made clear to family that this type of suggestion is unhelpful, and can only lead to making you feel worse, since you can’t just stop these things cold the way everyone thinks you should be able to do. It also makes you feel more alone with the problem, since it is clear that they don’t understand what you are going through. A good answer to give when they tell you to “Just stop,” is “Don’t you think I want to? Who would do this if they had a choice?”
2. They assume that everything you do is a compulsion, and keep labeling your behavior this way every time they think you’ve done one.
Unfortunately, when you’ve had OCD for a while, everyone tends to assume that every different looking behavior you are doing is a compulsion. Families can get overenthusiastic at times. They get too eager about wanting to see you get better, so they think that if they keep drawing your attention to what you are doing, you will stop. As if you don’t know when you are doing compulsions. Right. Also, this becomes like nagging after a while, and sort of ties in with the “Just don’t do it” advice. They need to be told that the only one who needs to recognize that you are doing compulsions is you, since you are the only one who can really do anything about them. If you had to depend upon others to tell you when you were doing these things, you would never learn to deal with them yourself. Also, no one likes to have their problems constantly pointed out to them. This is doubly true when other people keep getting it wrong.
3. When you’re in treatment, they watch you like a hawk, waiting for you to do a compulsion, and accusing you of not really trying.
As I just mentioned, families can get carried away, thinking that your recovery is really their responsibility, and not yours. They think they have to be in charge of your therapy, when you are really the only one who can be in charge of it, if it is going to work. This can come across so negatively on their part that it can almost make you feel that they are always waiting for you to screw up and fail. I think a little praise for the things you are getting right would go a lot further, but I sometimes tell families that if they can’t say anything positive, don’t say anything at all. With my own patients, I tell family members that my patient’s homework is their own business, and everyone else has to keep totally out of it. The family’s main homework assignment is to leave the person to do what they have to do. It is important to say something like, “The only one who really needs to be able to tell if I am doing a compulsion is me, since I’m the only one who can do anything about it.” It has to be the patient’s total responsibility. The goal is to learn to manage yourself and your disorder. Even if someone else could constantly monitor you, what would happen when they weren’t around?
4. If you are in treatment, they assume you are not going to do your therapy homework, and keep nagging you to do it. If they don’t think you are progressing fast enough, they may even threaten to stop your treatment because you aren’t working hard enough, and it is costing them a lot of money.
This is pretty typical of parents who aren’t very trusting, and who automatically assume that you are always looking for the easy way out. They can be suspicious, quick to blame, and tend to set unrealistically high standards without taking your abilities into account. They also tend to be kind of controlling. I think that parents of this type need to realize that threats and nagging are no way to motivate someone. Getting recovered is hard work, even when someone is motivated. I have actually seen some people sabotage their own treatment, just to teach their families to leave them alone. I have also seen some people get so discouraged at all the criticism that they just feel like giving up. I have always believed that people will rise or fall to whatever level of expectations you have for them. If you expect a person to do well, it is more likely that they will. If you expect nothing, then that is what you will probably get.
5. If you accomplish anything, instead of encouraging you, they’re quick to point out all the other things you still can’t do yet.
I like to think of those who do this as the “glass-is-half-empty people.” They seem to mostly concentrate on the negative, and ignore the positive. They tend to be perfectionists, as well as pessimists. Either you are getting it all right, or else you are totally failing. In OCD, there can sometimes be a tendency to think in all-or-nothing, black-and-white ways as a part of the disorder. I don’t think that sufferers need encouragement from their families to be even more like this. They also don’t seem to realize that overcoming OCD is a difficult chore, and it isn’t always easy to keep your morale up. It can really get you down, and this kind of negative focus is likely to make you feel like giving up because you can come to believe you will never succeed. No one likes to have their faults constantly pointed out to them, and it serves no good purpose to only emphasize what still remains to be done.
6. If you are in therapy, and show some improvement, they ask you how long it’s going to take until you are totally recovered, or complain that it is taking too long.
There can be several reasons for this kind of behavior in parents. One is that they just don’t know a lot about what therapy for OCD involves, and are unrealistic about how long it should take to recover. They see a little improvement, and they suddenly expect that you will instantly change everything. They want you to get well yesterday. The person treating you can help educate them about this. Another possibility is that they are perfectionists, and think that everyone should overcome their problems instantly, no matter how serious, or how long the professional say it should take. They just want what they want. The reality is, that everyone in treatment gets well only at his or her own pace, and not at someone else’s. It doesn’t matter what anyone else wants. You really can’t compare any two people who are working on their recovery.
7. If you slip up and do a compulsion, they tell you that you’re not trying, and that you’ll never get better.
Parents in this category don’t seem to be aware that one of the main things about therapy for OCD or any serious problem is that it doesn’t always go in a straight line. There can be many potholes and detours on the road to recovery. No one ever learns a new set of skills without making mistakes, or taking a step backward now and then. No one is perfect, neither in therapy nor in anything that human beings commonly do. In fact, there are many people who have learned more about getting well from some of their mistakes and slip-ups than from the things they got right. I can honestly say that, in over twenty years of doing therapy, I have never actually met anyone who recovered from OCD without getting it wrong now and then. You can ask family members, “If you went out to learn a new skill such as playing tennis, would you expect to play a championship game your first week on the tennis courts?” Doing behavioral therapy means learning a whole new set of skills, and really isn’t any different. You can also share this example with family members who expect you to get well instantly.
8. They blame the family’s troubles on you, and tell you how much easier their lives would be if it weren’t for your OCD.
Sometimes, when a person’s OCD is bad enough, it affects the lives of everyone in a family. Your symptoms may have forced family members to do compulsions with you, answer your questions, and do everyday things that you could normally do if you didn’t have OCD. They may have also been forced to cancel things they would have liked to do, give up their free time, not been able to go places, or say certain things. This can cause anger and resentment to build up on their part. Family life can get pretty tense. What they may really be angry at is your OCD, but unfortunately, they may be mistakenly angry with you. They may even feel, at times, like you are trying to make their lives difficult on purpose. None of this is true, and they are mistaken, of course, but then, the people who live with you are only human. What they should really be telling themselves is, “We really dislike your OCD and wish you didn’t have it.” Unfortunately, what may get communicated is “We don’t like you because you have OCD.” They need to not learn to confuse you, the sufferer, with the disorder. It should really be everyone against the OCD, and not against each other.
9. They keep constantly reminding you about all the bad times or scenes your OCD has caused in the past.
I think that the only place a person can really live in is the present. The past is gone and out of reach, and the future is always unknown. Bringing up old hurts or bad scenes can only make everyone miserable and won’t change anything at all. You can tell them, “I really feel bad about the past too. I wasn’t well and was only doing the best I could in a bad situation. Maybe we could all have done better. Why don’t we all try to let go of things we can’t change, and try to make things better for ourselves now.” My advice is, “Don’t let your past cripple your present. Let it go.”
10. They have become involved in your compulsions and help you to do them, or they do things for you that your symptoms keep you from doing for yourself.
Getting your family members involved in helping you to do compulsions, to get answers to your questions, or avoid doing or touching things that make you anxious may seem like solutions to your obsessive fears when you first start. Unfortunately, after a while, these things become a whole new set of problems. You start depending on everyone so much that you can become unable to get through a day on your own. Your family starts to feel trapped, because if they don’t cooperate, you might find yourself getting very upset and angry with them. You may feel resentful, because no on likes to constantly be dependent upon others. This can lead to fights, insults, shouting matches, etc. This is clearly not a good thing, because being dependent this way also keeps you locked into your illness. For you to get well, your family will need to learn to stop doing these things and to allow you to learn to face your fears on your own. In most cases, it will take a trained therapist to help them to gradually do this. Family members are taught that rather than solving the problem, they have become part of it, and that you will never recover as long as they are involved with your disorder in this way. You, yourself, may not be really eager to give up this help, but there really is no other way.
11. When they get annoyed at you, they threaten you with things that your OCD makes you anxious about (e.g. – that they will contaminate things, mess things up, throw things out, etc.)
As I mentioned earlier, when OCD enters a family’s life, anger and resentment can sometimes be part of the picture. Unfortunately, some families handle this less well than others. One of the ways in which this can go really bad is when family members use a sufferer’s fears against them as a way of punishing them for annoying them with their symptoms or for other resentments. They may threaten to contaminate things you use, mess up things you have arranged, throw out things you have hoarded, etc. They may even go so far as to actually do some of these things. Family members need to understand that this is simply cruel, abusive, and something for which there is no excuse. You need to remind them how much this hurts, and how it is like kicking you when you are down, and punishing you for something that you didn’t ask for. As difficult as your OCD may be for everyone you live with, it simply isn’t your fault. You are not to be blamed.
Overall, you can tell your parents and other family members you’re doing the best you can. If they have discussed OCD with a trained therapist, remind them of what they’ve learned, or have them look at sites like this one. This way, they will have a better idea of what to do, and what not to do, and also see that you (and they) are not alone.
Fred Penzel, Ph.D. is a licensed psychologist who has specialized in the treatment of OCD and related disorders since 1982. He is the executive director of Western Suffolk Psychological Services in Huntington, Long Island, New York, a private treatment group specializing in OCD and obsessive-compulsive related problems, and is a founding member of the OCF Science Advisory Board. More of Fred’s work can be found on his website. Dr. Penzel is the author of “Obsessive-Compulsive Disorders: A Complete Guide To Getting Well And Staying Well,” a self-help book covering OCD and other obsessive-compulsive spectrum disorders.