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?

Hey, I’ve been doing some research on OCD and think I may have it. I’m not 100% sure, but I have a lot of the symptoms. I want to get myself diagnosed, but my parents won’t let me. They agree that it’s very likely that I have OCD, but they think that if I try hard enough, I can get over it. I don’t know what to do anymore or if what I have even is OCD, and I want to be somewhat sure before a I do anything. Right now, I’m a junior in high school, but freshman year was when my “OCD” was the most severe. I think I had (and still do) the symmetry/order subtype and “just right” subtype. I was obsessed with writing things neatly to a point in which I kept forcing myself to erase and rewrite things until all the letters were straight and all the graphs were neatly drawn (typing wasn’t safe either because I use Notability and felt the need to align every text box and make them all the same length). Handwriting was especially a problem in calculus A, and it got to a point in which I couldn’t keep up with the notes, and the homework was taking hours a night because I was obsessed with making my work perfect. Needless to say, I didn’t get a good grade in calculus A and didn’t build a good foundation for future math classes. This makes me really sad because I was previously really good at math and had a bright future in the subject. Eventually, I just stopped trying in calculus A, but by then, I felt burnt out, couldn’t concentrate on anything, kept putting things off, and lost the ability to properly manage my time. I think it may have escalated to executive dysfunction at that point, and it carried over to all my other classes. As someone who was previously pretty productive and good at planning, this was a huge hit on my self-esteem. I was also obsessed with symmetry. If I touched one side of my body, I had to touch the other side in the exact same place. If I was coding something, I would have to evenly distribute touch across each key on the keyboard. It felt like everything was a heatmap, and the colors had to be kept in balance at all times. I also avoided odd numbers because they were considered “asymmetrical”. I was obsessed with routine and had to complete tasks in a certain way, a certain order, and a certain amount of time. Even something as small as combing my hair for five minutes instead of six caused me extreme distress. Writing one word that “sounded off” on an English paper left me unable to keep writing until I fixed it. I had to keep the sound of my phone at a certain volume (6 normally, 10 when exercising, and 12 when cleaning, divide everything by 2 when using a computer) and had to walk a round number (any number that ends in 0) of steps a day. I kid you not when I say that some days I woke up and didn’t want to live anymore. Sophomore year, my mental health improved and I probably seemed overly perfectionistic but not to a point of concern. However, this year, the handwriting issue relapsed in all its glory during physics, and I’m not able to keep up with notes or homework. I feel the same way that I did in calculus A, and I don’t want history to repeat itself. I want to ask my teacher to let me do my homework on paper rather than the iPad (it’s easier for me to write on paper due to increased friction), but I’m scared to ask because I don’t have a formal diagnosis. I don’t know what causes my behavior. I feel like if I can’t do things perfectly, no one will like me. I’ll lose all my friends, and no boy will ever want to go out with me. I know it’s irrational. Literally no one cares what my notes look like or how long I spend on each step of my morning routine or whatever, but I constantly feel like people are judging me and will hate me the second I mess up. There are two more times in my life that I can think of when I displayed symptoms of OCD, contamination OCD when I was 9 and pure/religious/magical thinking/health concern OCD (they all just kind morphed together) when I was 11. I can go into more detail if you wish. As of now, I just want to know my behavior sounds like OCD, and if so, how to more forward. If not, I would love to know what I do have and how to treat it. Thank you so much.

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.

Hi, I’m new to this app and newly diagnosed. Question for you all, What things did you normalize and do without a second thought that when diagnosed, you realized was actually your OCD? Mine was how concerned with germs I am. I hold my breath when I open a door so the rush of wind doesn’t infect my lungs from whatever is in the room. I thought everyone was really careful and concerned like me. But Ive learned it’s not normal the lengths I go to. What was yours?