What are some common/uncommon misconceptions about OCD and OCD recovery that you wished more people knew about?

Looking back, I realize I’ve had OCD since I was 7. though I wasn’t diagnosed until I was 30. As a kid, I was consumed by fears I couldn’t explain: "What if God isn’t real? What happens when we die? How do I know I’m real?" These existential thoughts terrified me, and while everyone has them from time to time, I felt like they were consuming my life. By 12, I was having daily panic attacks about death and war, feeling untethered from reality as depersonalization and derealization set in. At 15, I turned to drinking, spending the next 15 years drunk, trying to escape my mind. I hated myself, struggled with my body, and my intrusive thoughts. Sobriety forced me to face it all head-on. In May 2022, I finally learned I had OCD. I remember the exact date: May 10th. Reading about it, I thought, "Oh my God, this is it. This explains everything." My main themes were existential OCD and self-harm intrusive thoughts. The self-harm fears were the hardest: "What if I kill myself? What if I lose control?" These thoughts terrified me because I didn’t want to die. ERP changed everything. At first, I thought, "You want me to confront my worst fears? Are you kidding me?" But ERP is gradual and done at your pace. My therapist taught me to lean into uncertainty instead of fighting it. She’d say, "Maybe you’ll kill yourself—who knows?" At first, it felt scary, but for OCD, it was freeing. Slowly, I realized my thoughts were just thoughts. ERP gave me my life back. I’m working again, I’m sober, and for the first time, I can imagine a future. If you’re scared to try ERP, I get it. But if you’re already living in fear, why not try a set of tools that can give you hope?

I get asked about the name NOCD a lot. People might want to know how it’s pronounced, and they’re curious about our story. Every time, I’m excited to share a bit about what the name means—in fact, it’s an opportunity for me to talk about something everyone should know about OCD. First things first: it’s pronounced “No-CD.” And it actually means a couple things, both central to our mission: To restore hope for people with OCD through better awareness and treatment. The first meaning of our name is about awareness: Know OCD. Though we’ve come a long way, not enough people truly know what OCD is or what it’s like. How many times have you heard someone say “Don’t be so OCD about that,” or “I wish I had a little OCD. My car is a mess!” Things like that may seem innocent, but they trivialize the condition and keep most people with OCD—around 8 million in the US alone—from getting the help they need. The second meaning of NOCD is about treatment: No-CD. To go a bit deeper: Say “No” to the compulsive disorder. On one level, this is also related to knowing OCD—noto means “to know” in Latin. This inspired the name NOTO, the operations and technology infrastructure that powers NOCD the way an engine powers a vehicle. But this meaning goes even further. It has to do with how you can manage OCD symptoms—learning to resist compulsions. This is the foundation of exposure and response prevention (ERP) therapy, the most effective, evidence-based form of treatment for OCD. Learning how to resist compulsions with ERP changed my life, and it taught me how important it is to get treatment from a specialty-trained therapist who truly understands how OCD works. I’ll give you an example. When I was 20, my life was going according to plan. I was thriving on the field as a college quarterback, doing well in school, even winning awards—until OCD struck out of nowhere. I started having taboo intrusive thoughts, things that horrified me and went against my core values and beliefs. Desperate for help, I saw several different therapists—but no one diagnosed me with OCD. At one point, I was instructed to snap a rubber band against my wrist whenever I had an intrusive thought. It was supposed to stop the thoughts, but it only made my symptoms worse. Driven into severe depression, I had to put my entire life on pause. Once I started ERP with a therapist who understood OCD, I learned why: you can’t stop intrusive thoughts from occurring. Everyone has them—and the more you try to get rid of them, the worse they get. Anything you do to suppress them is actually a compulsion, whether it’s counting in your head, snapping a rubber band against your wrist, or using substances to drown the thoughts out. To get better, you have to learn to resist compulsions and accept uncertainty. OCD doesn’t get to decide how you live your life. How do you educate the people in your life about OCD? Whether friends, family, or strangers, I’d love to hear how you share your understanding and raise awareness about OCD.

Has anyone experienced their reputation affected or misunderstood because of a societally taboo OCD theme? Others catching wind of your obsessions and misinterpreting it, assuming the worst? I’m intentionally keeping it vague because I don’t want my specific situation to get reassured, but it’s been a real tough pill to swallow knowing that people close to me (and anyone else they might talk to) think of me differently. I’m unwilling to share about my OCD because I feel pretty confident it will be taken as an excuse or denial, and feels compulsive and reassurance seeking. Let me know if anyone here has experienced anything like it, how they handled it, exposures you did.