Janet Singer's son Dan suffered from obsessive-compulsive disorder (OCD) so severe he could not even eat. What followed was a journey from seven therapists to
My son Dan suffered from obsessive-compulsive disorder so severe he couldn’t even eat. He’d get stuck sitting in one particular chair, hunched over with his head in his hands, for hours at a time, was tied to the clock for all activities of daily living, and totally isolated himself from his friends and peers. I’ve always found it amazing that even though things were this difficult for him the last few weeks of his freshman year in college, he still attended classes and managed to successfully complete the semester.
After connecting with many OCD sufferers over the last few years, I’ve come to realize that Dan’s ability to continue on with his life is not that unusual. Of course, everyone’s circumstances are unique, but it seems to me that many people who suffer from severe OCD still get up in the morning and either go to school, work, or run a household. They are incredibly brave, doing this while often dealing with non-stop obsessions and hours and hours of compulsions. And while they may seem okay to the outside world, inside they are truly tormented.
How can those with OCD be so debilitated and yet so “functional?” OCD sufferers know their obsessions and compulsions aren’t rational; they just can’t control them. Couple this with the very real stigma that still exists around obsessive-compulsive disorder and you have people who live in fear of being “found out.” A mom with OCD who has harming obsessions may be terrified that her children will be taken away from her if her OCD is discovered. Someone else may be afraid of losing his or her job. These are just two examples of why those with OCD may use every ounce of energy they have to appear “normal.” While outwardly they may be smiling, inwardly they are tortured.
Unfortunately, hiding OCD rarely benefits anyone. Something as basic as receiving a proper diagnosis and treatment is delayed if the sufferer does not seek help or is not honest with his or her therapist. A diagnosis of OCD involves the disorder causing significant disruption in the sufferer’s life. If a person gets up and goes to work, or fulfills whatever his or her daily obligations might be, then the consensus might be that his or her mental health issues can’t be “that bad.” Indeed, the sufferer may believe that also. “If I can work (or go to school, or run a household), I must be okay.” But being able to function does not mean that your life is not significantly affected. And so valuable time that could be used working toward recovery is spent suffering instead.
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Another drawback of keeping severe OCD a secret is it perpetuates the misconception that it is a “cute, quirky disorder.” While inaccurate media portrayal definitely plays a role in this misunderstanding of OCD, the fact that so many of those with the disorder mask their suffering so well might also be a factor. Even if an OCD sufferer’s compulsions are visible to others (a need for symmetry at work, for example), what is obvious is their odd behavior, not the depth of their pain.
Additionally, for those seeking accommodations either at school or in the workplace, the belief that OCD is “no big deal” can be a roadblock to receiving the assistance for which you are entitled. Dan experienced this firsthand when the academic resource director at his school remarked at how well he seemed to be functioning. Why should he need any accommodations?
While I believe we have made some headway in reducing the stigma associated with all mental illness, we still have so far to go. If people feel the need to hide their disorder, then we obviously still have a lot of work to do. We have to continue advocating for OCD awareness and spread the word as to what OCD really is and is not. Also, we need to remember that things are not always what they seem. Your smiling co-worker may actually be severely debilitated by obsessive-compulsive disorder; you’d just never know it by looking at him or her.
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