I Really Am Sooo OCD: Writing About OCD to Reduce Stigma

In March, I had an opportunity to help spread the word about OCDincluding my own obsessions and strugglesin a huge public forum: the Huffington Post website. OCD was suddenly a timely topic after Lena Dunham’s character on Girls displayed symptoms, and while I was excited about the opportunity to tell a large audience more about the disorder, I was also nervous. It was a new thing for me to be so open to so many people. I mean, this was going to be on the Internet. The World Wide Web. Where anyone could chime in, letting me know exactly what they thought of my blog post.

While I’ve never really shied away from sharing my OCD diagnosis with people in my life, publicly writing about my OCD was different. I felt more exposed and unsure. This wasn’t a conversation, after allit felt like a confession.

But I was willing to make that confession if it meant helping others. Not long before I was diagnosed with OCD, I read an article I found on the IOCDF website about “bad thoughts,” and I felt better for the first time in a long time. Not only did I realize I wasn’t the only person who had ever had obsessions like mine, I realized there was help out there. It pushed me to finally make an appointment with an OCD specialist.

After I was diagnosed, I bought the book my psychiatrist recommended based on my obsessions (Imp of the Mind by Lee Baer) as well as two others. I read voraciously, researching the disorder, and feeling better and better the more I learned. But I never read anything written by someone with OCD; it was always by a professional who helped treat OCD (but those firsthand resources are out there!).

So, I decided to write about my own experiences in the hopes that it would help other people with OCD and reduce some of the stigma around mental illness. I love doing it, but that doesn’t mean it’s always easy. It feels a bit like standing at the edge of a diving board, with a long, snaking line of impatient belly floppers and cannonballers behind me. I can’t just stand there. But I can’t turn back, either. There’s only one option, and that’s to jump inHold on—is that an alligator? In a pool?!

At first I wrote everything down in a journal, for my eyes only. Eventually I tested the waters with Facebook posts, linking to articles here and there, and then letting people know during OCD Awareness Week that they could ask me anything they wanted to. Then, I took the plunge and submitted a book proposal to a publisher, and was amazed when they were interested. Now it was really happening! I had gotten so caught up in not wanting to be rejected that I hadn’t fully considered what success would mean, how much I’d end up telling strangers about my most shameful thoughts.

When the episode of Girls featuring OCD aired, my publicist suggested submitting a blog about my perspective on the episode. Without much time to talk myself out of it, I wrote the piece, sent it to my book editor for his take, and passed it along to my publicist. It all happened very quickly because we wanted to respond while the episode was still fresh in people’s minds.

My publicist submitted my first draft, and the editor at Huffington Post said that while she liked it, she’d like it even better if I added more of my personal experience. Gulp. I could do that, sure. But how much should I share? How much was enough for the editor, and how much was too much for me? I added a few details, including how my OCD was once so bad I’d considered suicide. Then I sent it back.

She liked it, she said. She’d post it soon.

There was no turning back now.

I was definitely excited. And definitely scared. I pictured the piece right up there with articles about philandering politicians and Kim Kardashian photo galleries, with hundreds of comments, some ugly and hateful. (I know what you’re thinking: Someone with OCD, blowing something out of proportion? Nah…)

Something beautiful happened instead. Tucked away in a smaller corner of the site, my piece targeted a more specific audience, and those who commented said they were grateful for my candor.

Thank you for writing this article…I hope it will encourage others who are suffering in silence to get help…and to realize that help is indeed out there!

Thank you so much. It won’t get much attention, but I’m happy any time I see someone speaking up for us and telling the truth. I didn’t know I had OCD until Googling “repetitive unwanted thoughts” years later.

Thank you a thousand times for writing this article. As someone who has had OCD since the age of 15 and who is now a mother with two teenagers with OCD I often struggle to make people understand what it is. Oftentimes people tell me that we look fine, we operate normally, what they do not see is the internal struggle with the true “o” of the OCD.

As I read these comments, I realized how rare it is for those of us with OCD to find people in popular culture to relate to. And who can relate to us.

A coworker emailed the article to several other colleagues, and one approached me afterward to say she wanted to give me a hug. Another said, “I have to admit, I’ve been that person—I’ve said, ‘I’m so OCD.’ I’ll be more careful from now on.”

I posted the link to my Facebook page, and friends shared it, and their friends commented on it. And guess what? Not one person said something nasty. No one made light of OCD. Everyone’s responses were sincere and genuine, and many said they’d learned something new about the disorder.

A former co-worker wrote, “Can we get together to talk?” and a friend of a friend wanted to get coffee right away—she realized there was a name for her intrusive thoughts and wanted to connect.

And a few weeks later I got this email from a friend:

I’m at a conference. The conference director comes around and hands out drink tickets to the vendors and generally makes sure everybody’s doing well. The conference has started supplying stickers that people put on their badges, things like “Diva” or “Runs with Scissors.” Hers was “OCD.” A few weeks ago I wouldn’t have thought about it at all… now I felt like asking “Do you really have OCD? If so, way to own it!” But I’m sure she was just making a joke because it’s her job to make sure that everything is “just right.”

I’d love it if I had just one of these responses, but reactions like this have been pretty common. Even a few months later people will email me to say things like, “I was in the bathroom washing my hands and so-and-so said, ‘I’m so OCD!’ and I wanted to say something”—and sometimes they do say something. Writing that one article had a ripple effect, and while I’m nowhere near finished spreading the word and stomping out stigma, I’m that much more empowered to continue doing so.

Sometimes I wonder why I had to have OCD, why I had to suffer for so long when all I’ve ever wanted is to be a good person and lead a happy life. But I think I’m beginning to understand why: I’m in a position to help others. I happen to have a writing degree, and I happen to work in the publishing industry. I happen to have OCD, and I can use what I’m already passionate about to let others know they’re not alone in their struggle. No one deserves to have OCD. But I’ve been lucky enough to have a strong, loving support network. I want everyone to have the same.

I’d love to hear from you. Have you shared your story with anyone? Have you encountered stigma yourself, and if so, how did you deal with it?

This entry was posted in Guest Post and tagged by Alison Dotson. Bookmark the permalink.

About Alison Dotson

I am the author of Being Me with OCD: How I Learned to Obsess Less and Live My Life, a nonfiction book for teens and young adults with OCD. Part memoir, part self-help guide, Being Me with OCD lets readers know they're not alone in their struggle to get better--and that there is hope.

10 thoughts on “I Really Am Sooo OCD: Writing About OCD to Reduce Stigma

  1. Alison,
    My name is Keith and I was diagnosed with OCD when I was fifteen. Now I am 32 and it looks like I have “Pure O.” Thankfully, I have a good support system. I just wanted to say to keep up the important work. I particularly liked your article on vigilance and ocd.
    Have a good day,
    Keith

    • Hi, Keith! Thanks for writing. It’s so nice to hear what people think of my posts. I wish I had had someone to connect to when I was really struggling, and that keeps me going. Hope you’re doing well.

      • Hi Alison, I just had a question. I have an article I wrote about my life experience with OCD and would just like to know where to submit it (I would like to post it on the OC foundation website if possible). It is about a page and a half (single spaced). Please reply back with where to send it. All the best, Keith

  2. Hi Alison, I so enjoy your writing! I have commented before on one of your posts. I don’t like to “own up” that I have OCD but a year ago a close friend had been saying things that made me think that she had OCD. I finally told her my story afraid inside that a part of her would recoil to know that I had this horrible and shameful(in my mind) disorder. I was very honest with her and she got help. She told me a few months ago that she felt like God sent me to her because when I spoke to her I truly “got” what was going on with her and gave her the hope that she had so wanted to know was out there. I understand what you are saying when you say “why do I have this?” My 13 year old daughter was diagnosed at 8 and it has been a struggle for both of us. I really don’t know why I went through 20 years of pain with this disorder before I got the proper help that I needed. Sometimes I feel sad about the missed opportunities and the pain, guilt and embarrassment that I have felt in the past. I do know that now being on the other side that the last 7 years have been so very precious for me. I never, never take anything for granted. I don’t think people can understand unless they have been through what we have been through and came out okay. Keep writing and sharing! You are helping others! :)

    • Thank you so much, Lisa! What a great story–I’m glad you were able to help your friend. It’s amazing how many other people are struggling around us, and it’s great that you recognized what was going on with her. I’m sure you were hyper aware of what your daughter was going through, too, to have been able to figure it out when she was eight.

      I’ve also been in recovery for seven years! I was diagnosed at age 26, years and years after my first symptoms started. But I’ve been doing well for a long time, and I feel so blessed. I ran across a man at work on Friday, and he said, “You always look so happy!” I thought for a bit and then said, “I am happy!” Of course that doesn’t mean I never feel down, but I am fully aware of how bad my life could be and I feel so lucky to be where I am now.

  3. Pingback: Writing about OCD | Being Me with OCD

  4. Hi
    I am a mother, my son I am sure has ocd,he is displaying the same symptoms is I my use that term
    I am heartbroken, as a mother I can\t give him any medicine like when he was young and he would get better,i know his mind is like a war zone,i hear him cry I hear his pain and I cry everynight and day for his pain ,he blames me for spreading the “germs” and I am contaminating the surrondings ,it came to the point where he did not eat or drink because of the contamination,he lost so much weight so fast,i was despersate and stay in his world with him as to not stress him more,now he just left and went to live with his dad,he left erevything behind,all his cloths,,”his life|”
    and never wants to hear from me again,I don’t know if me reaching out to him will make it worse or should I remain away,i love him with all my heart,

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