How I Learned to Live With the OCD That Disrupted My Life for Years

I spend a lot of time in my own head. Sometimes, being inside my own head can be fun. I like playing games in my head … with … myself. Like, wondering what we do when we no longer need the word “obsolete.” See? Fun.

But other times, it’s not as fun. As a kid, at an age I can’t remember, I started having these weird guilty thoughts that demanded action. For example, when I’d wash my hands and leave the bathroom, all of a sudden I’d think, “You didn’t wash them well enough.” If I tried to shake the thought off, a stronger reprimand would respond: “You want to get other people sick too, if you leave?” So I’d wash my hands and count to a minute. Then wash them again. And again. Eventually I’d be able to leave, but no number of hand-washings could expel these thoughts.

Here’s the tricky thing about obsessive-compulsive disorder: It’s not like I was hearing a voice separate from my own. This was my own voice, my own thoughts, my own commands. It was as if I was both in control and not in control of my thoughts at any given time.

While I’m sure it cost me some social coolness points (At a party in high school, a girl curled her mouth in a frown, looked at me and said, “What are you doing going to the bathroom five times in a row?”), I mostly managed to handle the OCD on my own. By senior year of high school, in 2002, I was counting all of my steps, washing my hands with an almost religious fervor, and having numerous battles a day with myself in my head.

But then, something snapped one night when I was studying a biology textbook. I saw the long view: the years and years of living with this kind of thinking and how exhausting it would be. I talked to my parents and they got me a therapist, but I wasn’t diagnosed with OCD initially, and the therapy didn’t help much.

I went to college at the University of Scranton, and my sophomore year, again, I faced a similar kind of breakdown. I made my way to the university counseling center, where the director of the program luckily understood what my problem was and recommended a book, “STOP OBSESSING: How to Stop Worrying and Start Living” by Dr. Edna Foa, the leading researcher in the world on the treatment of OCD. And she was based in Philadelphia, at the University of Pennsylvania’s Center for the Treatment and Study of Anxiety.

On a long shot, I looked up her email and quickly described my situation. She immediately got back to me. “Come in for some tests,” she said. So I did.

I met with her associates for a comprehensive assessment that lasted more than two hours (I would later find out this test was called the Yale Brown Obsessive Compulsive Scale or YBOCS) and scored a 22 out of 40. They told me this meant I suffered “moderate to severe” OCD. The program they had of Cognitive Behavioral Therapy could greatly reduce this number and my symptoms, they told me. But I couldn’t afford it. My healthcare didn’t cover it, and I had about 60 dollars in my bank account.

“You could apply for the research study,” the woman who tested me suggested. “You’d get the same treatment, and it’s completely free.”

So I applied.

And I got in.

My therapist was a kind male psychologist who began by explaining OCD to me: “There are obsessions — those repeated thoughts you have that you know are ridiculous, but that you can’t get rid of because you can’t prove to yourself once and for all that they’re untrue. Your compulsions are those thoughts or actions you engage in to counteract the obsessive thoughts. And you can’t just turn those obsessive thoughts off. It’s like if I were to say, DON’T think of a pink elephant with orange polka dots. The first thing you’re going to do is think about it.”

He explained, “Your treatment is going to go like this joke: There’s an executive, whose office is on the top floor of a skyscraper downtown, who snaps his fingers each and every time one of his associates enters his office. One day, one of them asks him about this eccentricity, and he responds, ‘To keep the lions and tigers and bears away.’ His associate answers, ‘We’re on the top floor of a skyscraper in downtown Philadelphia! Of course there are no lions and tigers and bears!’ ‘See?’ the executive answers. ‘It’s working.’ We’re going to find out what happens if that executive doesn’t snap.”

After a minimal amount of talking, we took action. “The first thing I want you to do — for the length of your treatment — is to stop washing your hands.”

I stared incredulously.

“You can do what you’d normally do in the shower, but no hand-washing.”

“But what about when I … number two …  ?“

“Not even then. The idea is for you to register how distressed you are in those times when you really want to wash them, but not to give in. Our research indicates that if you allow, and even encourage, the obsessions WITHOUT engaging in the ritual compulsions, the response thoughts and actions, it starves the obsessions of meaning. And, while you’ll still experience them from time to time, you won’t be as distressed by them.”

But I WAS distressed by them. At first. But, over time, it got easier. And my therapist gradually led me through exercises that helped me conquer the worst aspects of my experience with the disorder.

At the conclusion of the study, I took the YBOCS again and scored an 11 out of 40, a score so low, with symptoms so unrecognizable, that I wouldn’t have qualified for the study I had just been a part of. More importantly, I now had the tools for dealing with my OCD in the future. It might always be a part of me, but I’d always be in control of it.

I think sometimes those of us with mental disorders can get discouraged. We talk ourselves out of the possibility of getting better. Therapy that doesn’t work increases our skepticism. But I genuinely believe that there’s a treatment program out there that can help all of us better understand ourselves and conquer any demon we may be facing. Now, we just have to help each other find the ones that work.

Note: Being a teacher, I left some of the darker aspects of my disorder out of this version of the story.

Steve Clark is a sixth grade teacher and twice named Best Storyteller in Philadelphia at First Person Arts.

Like what you’re reading? Stay in touch with Be Well Philly — here’s how: