Relying on Community: Hannah Zidansek

Obsessive-compulsive disorder (OCD) itself is serious, but that doesn’t mean spreading awareness and clearing up misconceptions about it has to be. Enter Hannah Zidansek, who manages to explain what OCD is really like with humor and a skill I don’t have myself—making videos people actually want to watch. Hannah is an advocate for the International OCD Foundation and a welcome presence at OCD Conferences. Thank you, Hannah, for sharing your story to help others!

How long have you had OCD? How did you realize that what you were experiencing was OCD?

I have had OCD since I was 12 years old, which has been more than half of my life now. I remember the day it started. I was in class, sitting in first-period math, and it was as if a switch was flipped in my brain. Suddenly, I was overwhelmed with obsessive thoughts and anxiety. I remember thinking to myself, “Are these things really happening or is this all in my head? Why would I be thinking about these things if they were not real?” I did not know that I was experiencing OCD until I was 13. I spent a year trying to make sense of what I was going through while trying to keep it a secret, which caused difficulty for everyone in my life. One night I broke down and shared with my parents the constant thoughts that were in my head and how I could not make them stop. Thankfully, my mom understood enough about OCD to get me help. A week later I was sitting in a psychiatrist’s office receiving my diagnosis.   

Once you knew it was OCD how did you go about addressing it?

I was diagnosed sooner than the average person, but I did not receive proper treatment, exposure response prevention (ERP) therapy, for a few years after that. There were no resources available in my area at the time. I cycled through a few different therapists who hardly understood the disorder let alone the gold-standard treatment for it. My psychiatrist put me on medication and I was always in some sort of talk therapy, which failed to do anything but put a bandaid on things until I was severe enough to warrant intensive treatment. When I was 16, I spent five months at Rogers Memorial Hospital in the residential program for adolescents and teens with OCD. This is where I was first introduced to ERP and it saved my life.

Can you tell us about some of your symptoms?

My OCD is predominantly health and contamination based. I have two other diagnoses, emetophobia and panic disorder with agoraphobia, that are comorbid with my OCD. They all feed into each other. I have dealt with religious OCD and scrupulosity as well. My symptoms involve obsessions about my health, specifically my digestive system, and worries of contaminating myself with something that could lead me to get sick. This has involved an avoidance of a wide range of potential dangers such as certain colors, numbers, sounds, fragrances, and textures. My rituals have included avoidance, counting, tapping, obsessive praying, checking, reassurance seeking, information seeking, hand washing, and extraordinary efforts to decontaminate. I have overcome most of my rituals but still struggle with avoidance and reassurance seeking.

You have made some of the best stigma-busting videos about OCD. How has it felt to share your story? 

Thank you! Sharing my story has felt natural to me and essential for my recovery. I have spent so much time isolated with my own brain and feeling disconnected from the outside world. Talking about it with others, especially people who experience the same kind of afflictions, feels like the ultimate act of reclaiming myself and conquering shame. I have found that speaking about my struggles keeps me motivated and facilitates me in making sense of the bizarre ways I have suffered with this beast. It feels like purpose. 

When I’ve told people I have OCD I’ve gotten a mix of reactions, ranging from polite but curious to downright rude. What has your experience been like? When people say something uninformed about OCD how do you respond? 

I have been called crazy. I have been given terrible unsolicited advice. When I receive an appropriate reaction, it feels like a treat. I shouldn’t be surprised by decency, but I still am! My least favorite comment has to be “Me too! I’m so OCD about XYZ.” I understand the sentiment; the intention is usually to make you feel “normal.” But the minimization and misunderstanding of OCD has consequences. It is the reason so many OCD sufferers do not seek treatment. When I tell someone I have OCD, I am telling them that I deal with something painful, something that has been destructive to my life. I try to view these misguided comments as an opportunity to educate. Instead of responding with rage, which I believe to be justified, I do my best to inform them of the realities of OCD. My hope is that they will never again mistake their normal, healthy, and universally human idiosyncrasies with a debilitating mental illness. 

If you could offer just one piece of advice with others who have OCD, what would it be?

Find the community. Make friends with people who have OCD. My biggest breakthroughs in my recovery have been because of the friendships I have made through the OCD community. This is an isolating disorder that has the potential to fill you up with self-shame and self-stigma. I cannot overstate the healing power of connecting with other humans who know how heavy this disorder is to carry, because they’ve carried it too. The OCD community is full of incredibly compassionate souls with empathy that is hard to match. Though our fights are individualized, there is a feeling of togetherness that makes you realize you are never alone in this.