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
Over the last few years I’ve connected with a lot of people who have obsessive-compulsive disorder. Most of these OCD sufferers have some kind of story to tell about their early experiences reaching out for help. And they’re usually not positive ones. They are accounts of misdiagnosis, no diagnosis, or mistreatment. They are tales of being told by family they are fine, or they must be exaggerating. They are advised to just “suck it up” or at the very least relax. If they are lucky enough to receive a proper diagnosis early on, they are often either just given medication with no offer of additional therapy, or treated with the wrong kind of therapy.
As many OCD sufferers will attest, asking for help, especially that very first time, is a difficult and scary thing to do. In some cases, they muster the courage to tell a loved one or a professional about their obsessions and compulsions. In other cases, it has just become too obvious to hide anymore. Either way, it can be terrifying to put yourself out there, especially when you are so frightened, confused and anxious. To finally admit you need help, and then be dealt with so poorly, can be devastating. These early negative experiences might make OCD sufferers leery of future treatment. They’d rather have no therapy at all than risk being mistreated again.
What makes this all the more upsetting is the fact that studies have shown that although Cognitive Behavioral Therapy (CBT) is effective in treating many disorders, including OCD, the majority of therapists only use CBT occasionally, or in conjunction with other therapies. Exposure and Response Prevention (ERP) Therapy, the frontline treatment for OCD, is a type of CBT. So in many cases, it’s not that therapists don’t know about the documented benefits of CBT, it’s that they view their craft as an art, where they individualize treatment depending on their own personalities and their relationships with their patients. I find this highly disturbing. While establishing a good rapport with a patient is important, a good relationship in conjunction with the wrong therapy won’t help OCD sufferers. Indeed, it will harm them. In my opinion, it’s similar to having cancer that is highly treatable, only to have your oncologist forge ahead on a new, unproven treatment path.
In my son Dan’s case, he correctly diagnosed himself with OCD, but then met with a therapist who, unbeknownst to us, didn’t know how to treat the disorder. He either had never heard of ERP Therapy, or, as discussed above, tried to custom-make a treatment plan for my son. Appropriate therapy was therefore delayed, and of course his OCD worsened. He also became disheartened. Why wasn’t the therapy working? Was his OCD not treatable? Thankfully, he eventually did receive ERP Therapy, but the journey to proper treatment was not easy.
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It’s quite possible, even likely, that Dan’s original therapist thought he was helping my son. According to this article “every clinician overestimates how well they [themselves] are doing.” In many cases, patients are not honest with their therapist. For example, instead of letting their therapist know they are doing poorly, they will simply say they’re fine and are done with treatment. They will then leave and look for another therapist. In Dan’s case, it wasn’t until his OCD became severe, and I became more knowledgeable, that we realized the therapist had gotten it wrong. By then he had retired, so I never got the chance to talk with him about it. So yes, he is likely one of the many clinicians who overestimated his success.
How much smoother the journey back to good health would be if all therapists knew how to properly diagnose and treat obsessive-compulsive disorder. Or if all pediatricians and general practitioners were aware that ERP Therapy is the way to go, and made referrals based on this fact. Or if all OCD sufferers felt comfortable enough to be honest with their therapists about how they are feeling. There is a disconnect in the system and it is causing years of unnecessary suffering for many. We need more awareness of OCD and better education, so that these negative early treatment stories are replaced with positive ones. Getting the right help early on can substantially weaken the power of OCD. And with the right therapist and the right therapy, recovery from this insidious disorder is absolutely possible. Everyone who suffers from OCD deserves this chance to recover, and receiving proper treatment as soon as possible is the first, and most important, step.
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