By Alison Dotson, author of Being Me with OCD
Lately I’ve been writing a lot about my experience with obsessive-compulsive disorder (OCD)—I’ve been writing about it for years, actually, but until recently my work has been for my eyes only. I’ve journaled about it since I was diagnosed seven years ago, and I always hoped to share my story with others.
I was thrilled when Free Spirit agreed to publish my book for teens and young adults with OCD, especially since one of the two most common times for OCD to emerge is between the late teens and early adulthood. Reading about OCD helped me so much that I wanted to help others by writing about my years-long struggle and eventual triumph over my most persistent and disturbing obsessions.
But I knew telling my story wouldn’t be enough—at least not for me. As much as I’ve been through, and as many different types of obsessions as I’ve had, my experience is just scratching the surface of the disorder. So I set out to find teens and young adults who would be willing to tell their stories as well, using my book as a platform for increasing awareness and creating understanding.
This was the part of the book-writing process I was most worried about. I knew I could handle my part. That was all up to me, and while I couldn’t describe it as easy, it was under my control. Finding young people who would write essays about their most painful and embarrassing obsessions and compulsions felt like a huge task.
After researching OCD organizations, online forums, and support groups around the country, I contacted every one that I could. One organization put my request in their monthly newsletter, and in one day I received several emails from young adults asking what I needed and how they could help. “What should I write about?” they wanted to know. “Anything,” I told them. “How you found out you had OCD, what symptoms you struggled with, how you got help, whether you’ve relapsed and how you got through that. How did you tell your friends—how did they react?”
One psychiatrist told a teen patient and her mother about my book, and they contacted me, very enthusiastic to work on the essay and willing to work with me to make sure it reached other teens. I took to an OCD support page on Facebook, spending time there every day, offering advice when I could and encouraging people who were having a hard time. Over time I noticed a few teens who posted on the page with some regularity. They were articulate—and frustrated, and confused, and scared. But I could tell they were resilient, too, and I thought other teens could learn a lot from them.
I emailed them, explaining that I was writing a book for teens but that I was in my 30s and I had only so many symptoms and anecdotes about recovery to share. I needed their help, I said, to help even more young people like them. Would they be willing to write an essay?
Everyone’s enthusiasm amazed me. Even when they wanted their essays to be anonymous (“I really don’t need my friends to know I have OCD,” one said), they were determined to write about their symptoms, their diagnosis, and their journeys to recovery, including their pitfalls.
I’m inspired by their courage. They’re stronger than I was at their age, and well on their way to recovery and amazing lives. And the best news, as far as I can tell, is that they already know they have OCD! I wasn’t diagnosed until I was 26, a couple months shy of my 27th birthday. How wonderful for them to grab this by the horns now—and how encouraging to realize that this often-debilitating illness is being identified and addressed not long after it emerges. I hope this is a trend that will continue.
Awareness is key, which is why I’ll continue to write about OCD and why I’m so incredibly grateful for the young people who stepped up to round out my book with their essays. The next generation of OCD sufferers is not taking the disorder sitting down.
Do you know any young people with OCD or another disorder who have impressed you with their resilience? Please share your stories in the comments.
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.
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