How open are you about your OCD to friends, coworkers, bosses, professors, in-laws, etc.? As I learn more about OCD, I realize that it’s a huge part of who I am- for better or worse. Given the choice, I would choose not to have it of course. But the community and sense of identity I’ve gained since my diagnosis and meeting fellow OCD peeps is kind of special to me. I don’t know how to present myself to people. In some ways, I kind of want to tell everyone I have to interact with regularly that I have OCD as a little disclaimer. It would save a lot of explaining and awkwardness. But I also hate self disclosing and don’t like to answer a lot of questions or have to educate people on OCD when they assume I must live like Monk since I have OCD 😐 I also don’t want to be known as the weird girl who over shares or makes something their whole personality.. and if I were to be up front about my OCD, I don’t want people to think I’m one of those, “omg I’m soooo OCD! I have to make sure all my labels face out!!” type of people. When do you choose to let people know about your OCD? Is it something you keep to yourself, or is it something you “take pride in” and are up front about? Are there certain people you tell (like boss, college advisor, etc.) and others you don’t disclose that to? How much of your identity is OCD?

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.

For those of you in relationships with ROCD, do your partners know of your diagnosis. I am new to treatment and new to this avenue of mental health. I am generally pretty open and honest with my partner about things but the dark side of my mind I keep hidden. I’m scared to tell him about this if I’m diagnosed. And I’m scared that if I’m diagnosed and something real does go south in the relationship then my diagnosis will be used against me.

i was recently diagnosed with ocd and i think im having a hard time identifying what is my ocd and what isn’t? or im not really sure how to express myself but i feel like i still don’t really know much about ocd and feel like an imposter saying i have it because i don’t know enough about it to really understand it? like all my life these things i would do or say or think or feel were i guess “normal” to me,, so how do i move forward when i don’t know really where to begin?