When I told a friend that I’d been diagnosed with obsessive-compulsive disorder (OCD), he said, “Are you sure? I mean, I’ve been to your apartment — it doesn’t seem like you clean a lot.”
I couldn’t really blame him for thinking that’s what OCD is all about, but it didn’t make it any less frustrating. I was in an early, vulnerable stage and while I had welcomed my diagnosis because it meant I could be treated, I wasn’t ready to share many details.
Saying “I have OCD” isn’t necessarily a big deal, but explaining the impact it had on my life for years and years—that is hard. I can’t nonchalantly tell a co-worker, “No, no, I’ve never washed my hands excessively, but I did have an irrational fear that I might be a child molester.” It’s usually not the right time or place to explain how much I suffered from horrible, intrusive thoughts that made me question who I was and think I was morally bankrupt. And it’s painful to talk about how my obsessions led me to consider suicide before I finally received professional help.
Initially I feared how people might react to my “confession,” and I didn’t talk about my diagnosis. People often picture an OCD sufferer as a super-organized person who keeps everything spotless. They don’t know how to reconcile that preconception with my reality. Let me tell you—I am not very organized, and my house is definitely not that clean. People figure that if I have OCD, then the disorder can’t be so bad. They think I must have a mild case, because have you seen my desk drawer? What a mess!
Steering people away from that relatively innocuous impression and toward my own taboo, intrusive thoughts sometimes feels like a bad idea, like I’m welcoming judgment. I’m aware that I’m sacrificing privacy and breaking the protective bubble around me in my efforts to combat stigma.
One day a co-worker approached me after she’d read an article I’d written about OCD and told me she thinks she might have OCD too, because she keeps her clothes really organized. Not up to the task of explanation, I nodded and smiled and joked that being neat is definitely not a “symptom” I have.
Another day, a different co-worker pointed to her neat row of pencils, thinking we had something in common. And I felt the blood rush to my face. I asked her if organizing her pencils like that had ever made her cry, or if she couldn’t stop thinking about the pencils if they weren’t straight. “Do you straighten your pencils because you think a family member will die if you don’t?” I asked, my voice shaking.
The more pervasive these misconceptions are, the harder it is for people to get help when they are suffering. That’s the biggest problem with people’s nonchalance about the disorder — thinking it’s a small set of symptoms and not realizing how terrible it can be. It took me years to get the help I needed because it never occurred to me that I had a problem that could be treated. My knowledge about OCD was limited to what I saw on TV and in movies; I didn’t see a connection between what the media portrayed and my own unwanted thoughts. I thought I was a bad person. I was afraid to tell friends or family members because I thought they’d judge me or stop loving me. I was even hesitant to tell a therapist, because my thoughts were so wrong I really believed they’d have a professional, moral, and legal obligation to report me to the authorities or have me checked into a psychiatric ward.
Instead I told a few people I was depressed, and I confided to one of my oldest friends that I tend to obsess about things. She mentioned OCD, and I started to research the disorder. I made an appointment with an OCD specialist. Sharing my darkest secrets with him was one of the hardest things I’ve ever had to do, but it saved my life.
So even though I don’t always feel up to the challenge of spreading awareness, and sometimes I get emotional about it, I won’t give up. If I can keep others from suffering for as long as I did, it will be worth it.
Alison Dotson is a writer, copyeditor, and proofreader who was diagnosed with OCD at age 26, after suffering from “taboo” obsessions for more than a decade. Today, she still has occasional bad thoughts, but she now knows how to deal with them in healthy ways. Alison is the president of OCD Twin Cities, an affiliate of the International OCD Foundation, and has been featured as an OCD advocate on the International OCD Foundation Blog, the Huffington Post, and in Glamour magazine. She lives in Minneapolis, Minnesota, with her husband and two rescue dogs.
Alison is the author of Being Me with OCD: How I Learned to Obsess Less and Live My Life. You can find her book, along with other books about b‘ing stigma-free, in our bookstore.