“Coming Out” as Having OCD

Editor’s Note: Today is the first day of International OCD Awareness Week! OCD Awareness Week is an important opportunity to talk about what it really means to have OCD, help dispel myths about mental health, and start to break down stigma.  Part of that process is talking to your friends and family about OCD. Our blog post today is from guest contributor Jackie Lea Sommers, who talks about her experience opening up about her OCD for the first time.

“Coming out with OCD” is also the topic for today’s #OCDchat, online TODAY at 12 noon Eastern time. To join, click here.  And after you read Jackie’s post, feel free to tell your “coming out” story in the comments below. – Carly

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Growing up, I knew that I thought about things far more deeply than most of my friends—and that’s not a slam on their intelligence or depth.  My pre-diagnosis obsessive-compulsive mind just extrapolated further than others my age, prompting me to worry about things that weren’t on any other people’s radars.  This was the case for a lot of childhood and high school and even college.  My friends all sang the same song, the chorus of which was “You think too much!”

After college, things spiraled out of control, and before I knew it, OCD had backed me into a corner of paranoia.  I took a risk and talked to my college mentor, who insisted I see a therapist.  The therapist insisted on meds, and the psychiatrist I met with finally used the words “obsessive-compulsive disorder.”

To be honest, I was a little shocked.  OCD?  Not me!  Obsessive-compulsives were those neat-freaks who had to touch doorknobs forty times and stuff like that.  I didn’t do anything like that—or so I thought—and my bedroom was a pit.

I obviously had a lot to learn about OCD.

I didn’t go public with my diagnosis until a couple years later—and I mean public.  After college, I volunteered as a camp counselor, and I talked about my OCD for the first time in front of an entire campground of high school students and fellow counselors.  Even though I had memorized what I planned to say, it all flew out the window in the face of the hushed crowd.  I was physically shaking, reading my once-memorized talk, and when it was over, I walked from the front of the room all the way straight out the door and wept.  It felt as if I’d crossed an important line, and there was no going back.  I was most scared about having others treat me differently.  I thought that maybe they would baby me or talk down to me or tiptoe around me.  I thought they would smile placatingly and treat me as if I were going to shatter.

Instead, what happened is this: almost immediately afterward, a longtime camp friend of mine, who was also a counselor that week, asked if we could chat.  We went down to the dock, and there he told me that he also struggled with OCD.  In fact, he had checked the door at his parents’ house so many times that he broke the handle.  He had never told anyone about his struggles at that point—I was the very first person he’d admitted this to—and I know I was given that honor because I spoke up first.

It gave me courage.  A tiny bit, at least.

That next fall, as I recruited at Midwest high schools for the university where I work, I asked for opportunities to speak to the student body, and what I shared with them was about my OCD, about being real with one another, about how freedom begets freedom.  And the reactions were almost always positive.  Students would come up to me afterward and share with me about their struggles—me, a stranger!—because I’d shared first.

So I started sharing closer to home too.  When I’d meet up with someone for coffee, I’d drop the letters OCD into our conversation.  When I’d be on a roadtrip with someone, I’d say the words.

And people started to share back—about their struggles, their problems, and sometimes their own battles with mental illness.

The more I shared, the more others shared.  It was like I was finally living in my true self, and it was drawing that out of others.  It became almost a game to me—I couldn’t wait to tell people that I had OCD!  Who knows what they might need to get off their chest, and I would be opening up a path for them to do so.

It is easier to say, “Me too,” and that’s an advantage I want to give to others.  That’s why I blog about OCD and HOCD and the strange and ugly affinity we obsessive-compulsives sometimes show for our captor.  That’s why I speak in college classrooms and summer camps and church youth groups about mental illness.  That’s why I share about my own self-doubt and the rollercoaster of my life.  That’s why I celebrate OCD awareness week with people across the globe, why I count it an honor to be an OCD awareness advocate.

Because I want to give people every opportunity to say, “Me too.”

I feel blessed.  I and my OCD have been well-received by most people.  The hardest issue I have to face is the ignorance so many people have about OCD.  But I can gently (or forcefully–ha!) educate them that OCD is more than being clean and organized, that OCD is an illness like any other.

I count it a privilege to share what once were my secrets, and if that sharing allows even one person to say, “Me too,” then I am grateful.

This is a revised version of a post that originally appeared at www.jackieleasommers.com in July 2013.

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In honor of International OCD Awareness Week, if you are ready to share your OCD story, we ask you to download one of our #OCDweek signs and consider taking a photo of yourself holding the sign and sharing on Facebook, Twitter, Instagram, Pinterest, using the hashtag #OCDweek. Let people know that OCD is not just about color-coded closets or other stereotypes!