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.