Thomas Smalley was diagnosed with obsessive-compulsive disorder (OCD) in high school, and it wasn’t long before he was spreading awareness of the disorder: He spoke about it at Yale when he was only 16! Thomas found purpose in his pain and has helped combat stigma and educate others about OCD. Learn more about his journey, including some of the bumps along the way.
You won the International OCD Foundation (IOCDF) Hero Award in 2019. How did it feel to go from struggling and feeling alone to being recognized as someone who has helped spread awareness of OCD?
It has been an unbelievable journey from the time I was diagnosed at age 15 to now walking across the stage and being recognized for my advocacy efforts. Truth is, I still didn’t feel like a hero even accepting such an honor. The OCD community means so much to me and without the IOCDF I wouldn’t be here today. I owe everything to the amazing support I’ve had around me. That being said, it was a great feeling to look back and think about how much I’ve overcome to get to this point. I want to be an example to people struggling that keeping the faith and determination to improve can bring you up from rock bottom. That doesn’t necessarily mean you won’t have bad days. I still struggle today. But this journey has shown me how to manage.
When did you first experience symptoms of OCD, and when did you realize what you were going through might be OCD?
I first realized my symptoms when I was a freshman in high school. I was closing my locker door over and over again until it felt “just right.” Everything I did had to be done until it felt “just right.” My compulsions would take up to 12 to 14 hours a day, which is when I realized there was a serious problem because it was taking everything away from me. It took me probably eight months to sit my parents down and tell them that I need real help. With the unfortunate stigma around mental health, I was ashamed and felt that I’d be disappointing my parents. When in reality, they were very understanding.
Once you were diagnosed, how did you go about treating the disorder?
The combination of exposure and response prevention (ERP) therapy and medication quite honestly saved my life. Although ERP is very intense and forces you to sit with excruciating anxiety, it’s that time accepting the uncertainty and discomfort that has helped me learn to cope with my constant obsessions 24/7. The medication helps ease that anxiety as well. I was fortunate enough to find a therapist who is trained in ERP who I connected with very well and still work with today.
Tell us about your YouTube channel, Struggle Into Strength. What inspired you to create videos about OCD?
My YouTube page started my sophomore year of college. It started kind of quietly with a friend of mine who was interested in film. I had spoken at Yale, a few podcasts, and at several national OCD Conferences at that point. I was trying to keep breaking down that wall of negative stigma around mental health and create the idea of a day-in-the-life documentary about dealing with OCD. I felt I needed to bring my advocacy for mental health to my college campus because it isn’t brought enough attention but is so prevalent among college students. At first I didn’t expect much, but the views kept piling up. My feeling was even if only one person watched it, that was one more person educated about OCD, which makes it all worth it.
You started speaking out about OCD when you were a teenager. What would you tell a young person who wants to start advocating for OCD awareness but isn’t sure where to start?
Start by sharing your story with one person. Start being open about your struggles. I think what draws me to advocacy work is the amazing connections you make with others. We all know how lonely OCD makes us feel and that sense of community you’ll get from sharing your story is something I cherish every day. Looking for different awareness events along with reaching out to other advocates is a great place to start looking for any opportunities. I was fortunate to be asked by my therapist to speak at Yale at age 16 and from there just kept going because I loved giving others hope.
You’ve been discriminated against and bullied because of your openness about your OCD and mental health struggles and even found yourself in the news at one point. How did you overcome discrimination?
OCD can feel so isolating at times and being discriminated and bullied about it definitely can make it worse. However, I tried my best to take a step back and see those situations as great opportunities for advocacy and education about OCD. I try to remember that not everybody understands mental illness and OCD. And then I tried to turn to the positive people and things in my life. As an advocate I’ve learned that not everybody is going to have something nice to say. Sometimes there will be negative feedback. In those instances, it’s best to try and educate and move on.
If you could share just one piece of advice with someone with OCD, what would it be?
God gives his most challenging battles to his toughest soldiers. I’ve seen rock bottom. I’ve been at the point of not wanting to live. It gets better. It takes hard work and courage, but treatment can help you take back control of the life you want to live. Use your resources, such as the IOCDF and all of the amazing public advocates. People want to help you succeed, so make sure to never feel ashamed or broken. Understand you are a part of a strong, family-like community.
Alison Dotson 