As an advocate for OCD awareness, I have connected with many people who have obsessive-compulsive disorder. It seems to me that most people, in particular those who are older, have some kind of story to tell about their early experiences reaching out for help. And they’re typically not positive accounts. They include details of misdiagnosis, mistreatment, or both. 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 people with obsessive-compulsive disorder will attest, asking for help, especially that very first time, is a difficult and scary thing to do. People with OCD typically realize their obsessions and compulsions make no sense, so they understandably don’t want to put themselves out there, risk embarrassing themselves, and admit to irrational thoughts and actions. In some cases, those with OCD do finally muster the courage to tell a loved one or a professional about their obsessions and compulsions. In other situations, it has just become too obvious to hide anymore. Either way, it can be a terrifying experience to have your OCD out into the open, 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 those with OCD not only leery of future treatment, but left feeling hopeless. What’s the point?

In my son Dan’s case, he correctly diagnosed himself with obsessive-compulsive disorder at the age of seventeen, but then met with a therapist who, unbeknownst to us, didn’t know how to properly treat the disorder. Appropriate treatment was therefore delayed for over a year and a half, and of course his OCD worsened. He also became depressed and disheartened. Why wasn’t the therapy working? Was his OCD not treatable? Thankfully, he eventually did receive the right treatment in the form of exposure and response prevention (ERP) therapy, but finding the right help was far from easy. So much wasted time. So much unnecessary suffering for not only Dan, but for our entire family.

How much smoother the journey back to good health would be for all those with OCD if each and every health-care provider was able to properly diagnose obsessive-compulsive disorder and point those who are suffering toward the right treatment. We need to keep advocating for OCD awareness and education, so that these negative early treatment stories are replaced with positive ones. Getting the right help early on (even young children can learn the skills necessary to fight OCD) can substantially weaken the power of OCD. I can’t think of a better way to fight OCD than by attacking it way before it has had a chance to completely devastate your life.

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