Ryan Bernstein is a senior in high school. He is a youth advocate for Obsessive Compulsive Disorder (OCD) having lived with it for many years. He is the author of OCD to Me: An Anthology of Anxieties, and an Ambassador for theInternational OCD Foundation. We asked Ryan to share some of his journey and how he’s advocating for other individuals with OCD.
What have you learned about OCD through your journey?
I’ve learned that OCD is diverse. It is so much more than excessive hand-washing or being meticulous. OCD is powerful and pervasive. I know because I’ve had to deal with it.
I’ve learned that not letting people know how you feel keeps you isolated and actually makes OCD stronger. I know that must sound funny — to let people know that you have something that perhaps you can get teased about, or feel embarrassed by, but for me, connecting with others helps me change how OCD is perceived which not only helps me but helps others as well.
I’ve learned that reaching out is not only empowering but matters. I started an anxiety group at school where we discuss coping skills and how we’re feeling and the response has been extremely positive. Every time I speak about OCD, I believe it has a ripple effect. It not only feels good to share but it connects our experiences.
Why did you decide to write a book?
What was especially challenging for me was not getting an accurate diagnosis until just a few years ago. When you don’t know why you feel anxious all the time it can be self-defeating.
OCD to Me: An Anthology of Anxieties came out of feeling lost during that difficult period in my life.
I wanted to educate people and raise awareness about OCD. I wanted those struggling with OCD to know they are not alone. I focused on what it feels like to have OCD because too often the viewpoint is from recovery so I collected 60 powerful stories from people around the world who share their experiences. My book also contains resources and tips from nationally recognized experts in anxiety disorders.
Why do you think it’s so important to talk about OCD?
Mental illness is associated with negative stigma. People worry about being judged. It takes courage to share because OCD tries to make you feel helpless and hopeless. I believe that the more we can talk about it the more we can learn from each other. The more we learn the more we can change misconceptions. The more we speak out about OCD the more we help each other. I hope my book and my speaking out about OCD will do just that.
What advice can you give to others?
My advice is to take tiny steps and never stop believing in yourself.
All proceeds from book sales will be donated to the International OCD Foundation.
How inspiring that you are taking steps to help you deal with OCD. My daughter has been diagnosed since age 8 and unfortunately, she has been on medication since that time. She cannot seem to take control of it completely. She is 20 years old now and living along in athens where she attends college. The move has been stressful on her and the straight A student now has Cs and Ds. I have been searching since her diagnosis for someone to understand from a parents view and also for her. She has had several psychologists but none of them help a whole lot. She knows she needs to keep it under control and the steps to help her do that, but sometimes it is just too difficult.
After years of hiding OCD from her schools and friends, she finally went to the college and was able to get on some type of list for disability, to have more time if needed to get to class or miss classes. I don’t know what type of support there is out there for advice on navigating a world in which no one really understands what you are going through. She was really depressed this past fall-Christmas, but is doing better now. She is very smart and aspires to become a vet surgeon. I can only pray that she can complete this- first of which is to get her grades up and get her degree and hopefully get into vet school. I cannot fathom from a parent’s view for her not to achieve her goals (Goals of being a vet since age 5).
I am writing this more for myself I imagine, I am struggling today. Feeling like I have failed her as a parent- not knowing where to turn to get help for her.
I see scholarships and aid for all type of illnesses like autism etc., but never anything for OCD. It is a shame so many people don’t know more about the disease and there isn’t more awareness. I applaud you for your effort in bringing attention to it.