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How to Fight Against Stigma This OCD Awareness Week

I am sitting in the office of the psychiatric nurse practitioner. I’ve been here for what feels like hours, but is probably around 45 minutes. It’s springtime, but everything inside of me screams darkness. I am 13 years old, and yesterday, I attempted suicide.

She asks me, “Do you ever feel like you have to do things a certain number of times?” I think to myself, Now she’s testing me for obsessive-compulsive disorder (OCD). I don’t have that — I’m “much worse.”

I say “no.” I lie. I don’t let myself think about the fact that my earliest memories are of having to do things a certain number of times and hiding those actions from my parents and teachers. I immediately push away memories of my 8-year-old self banging her head against the walls of her bedroom because she couldn’t stop replaying things in her head, lying to her loved ones about where her bruises came from. I banish any thoughts that my obsessive calorie-counting and restricting are at all compulsive in nature, that the scars on my wrist stemmed from anything like OCD, that when I tried to kill myself yesterday it was because I had OCD. It didn’t make sense. I wasn’t neat or organized, I wasn’t a germophobe. I couldn’t have OCD. What I had had to be “worse.”

Fast forward a little over a year – I’m nearly done with my year of outpatient dialectical behavior therapy and I’m doing well, considering where I was a year prior. I appear to be on the right track. And still, I keep getting stuck. I am 14 years old now, and my therapist thinks I have OCD.

A few months later, I am getting ready to travel 1,000 miles from home to attend a partial hospitalization program for OCD. I don’t understand why, though. I am 15 years old, and I can’t function at home or in school. “People don’t become ‘unable to function’ because of OCD“, I say to my mom. “OCD isn’t like my depression or my eating disorder; it’s not serious like they are.” I go to treatment, and just over a month later, I come home. I continue my OCD treatment, sticking to a strict regimen of exposure-response prevention therapy. I get better; I learn. I have moments of success and frequent lapses. Over time, the moments of success last longer, and the lapses become less frequent. Also, I become educated on my disorder.

Fast forward five years – October 2019. I am 20 years old now, and I have OCD. I am in my third year of college studying psychology, preparing to apply to graduate school to become a psychologist.

And today, I am sad. My heart hurts thinking about that young girl who went to such great lengths to hide her pain because she was ashamed of how it manifested. That young girl who didn’t know OCD could be real, painful and anything but the stereotyped media representation of it. That young girl who was smart enough to know she had a “problem,” but never got the chance to learn what it was. That young girl who could have been diagnosed sooner had she known what OCD actually looked like. That young girl whose undiagnosed OCD spiraled into depression and an eating disorder, who started self-harming before she hit puberty. My heart hurts for that young girl who tried to kill herself because she didn’t see another way out.

And what hurts my heart more than anything is that young girl could have been saved so much sooner if she didn’t live in a world of stigma. Had her culture encouraged emotional vulnerability, perhaps she wouldn’t have felt like she had to hide her suffering. Had the media not stereotyped OCD into a synonym for clean or organized, perhaps she would have made the connection sooner. Had the adults in her life not joked about “being so OCD,” maybe she would have opened up about her suffering. Had the adults in her life actually understood what OCD was, perhaps they could have spotted the signs earlier.

My heart hurts because the stigma of OCD caused that young girl to go undiagnosed for a decade. My heart hurts because the stigma of OCD allowed that young girl to develop other life-threatening mental health conditions, because she could have died by suicide when she was only 13 years old.

OCD stigma is everywhere – in every “I’m so OCD” comment, in every minimization of a compulsive behavior, in every OCD punchline, in every stereotyped television and movie character. Each time another instance of OCD stigma leaves someone’s mouth, is shared on social media or is shown on a television screen, a chance for somebody to heal is gone.

My heart hurts for the child with OCD who, today, will hear their parent say, “stop being so OCD,” and will give up any hope of opening up about the pain they are experiencing. My heart hurts for the student with OCD who, today, will hear their favorite teacher say, “I’m so OCD,” and will feel like they are being stabbed in the chest. My heart hurts for the person with OCD who, today, will hear their friend say, “I wish I had OCD so I can be organized like you,” and will be forced to question their friendship. My heart hurts for the person with OCD who, today, will go to the movies and hear the main character say, “my OCD is acting up again,” and will instantly feel shame and self-hatred.

I have learned to peacefully coexist with my OCD. I have learned to be the one in control, to recognize which voice is mine and which is OCD‘s and to ask for help when I need it. I am thriving, preparing for a career helping people like my younger self. Most days I am happy. I am proud of myself for building my life from a place where just seven years ago I wanted to die. I am grateful that despite my best efforts as a young teenager, I am alive.

And I am also sad. I am sad because we live in a world where the stigma of OCD outweighs actual education. I am sad because I cannot go a day without hearing a joke about the disorder that nearly took my life. I am sad because I am one of the lucky ones – far too many people don’t get the chance to thrive like I did.

So today, I will allow myself to be sad. And in my sadness, I will ask you to reconsider how you view obsessive-compulsive disorder, to speak up the next time you hear your friend make a joke about OCD, to educate yourself and your loved ones about this debilitating condition. I will ask you to keep doing this until the experiences of people like myself are not shaped by stigma. In my sadness, I will continue to fight against stigma — and I ask you to join the fight, too.

Getty image via Adkasai.