OCD is often highly misunderstood and stigmatized, and people often spend years—even decades—before learning that they have the condition. When people finally figure out that what they struggle with has a name, it can give them a completely fresh perspective. So how do people actually end up finding out that they have OCD? Here are some of the most common ways that people share with us: Searching their thoughts online. It’s very common for people to learn about OCD by Googling some of the thoughts or behaviors they’ve experienced. This can involve anything from looking for reassurance (“Is it normal to check on my baby every hour at night?”) to searching for information about OCD specifically (“Do I have OCD?”). Word of mouth. Other people’s experiences can be powerful and illuminating. It’s not uncommon for people to recognize their own OCD symptoms by speaking with a family member who also struggles with the condition, a coworker who received ERP therapy in the past, or a friend who shares their own intrusive thoughts. Social media. It’s probably not surprising to hear that social media has allowed many people to learn about others with similar experiences. Whether it’s from a personal story on TikTok or someone setting the record straight in the comments of a misinformed Facebook post, social media makes a wide range of information about OCD accessible. Podcasts, TV, and movies. Many popular podcasts about mental health or even related topics like parenting can give people access to information about OCD. And while many depictions of OCD in TV shows and movies are inaccurate or rely on stereotypes, they can lead people to recognize real OCD symptoms in their own lives. Mental healthcare providers or doctors. While it’s not uncommon, people find out that they have OCD from clinical sources less often than you’d think. When they do, it can come after years of confusion, misdiagnosis, and seeing several different providers in a search for answers. How did you first learn that you might have OCD? Reply with your own story below.

Last year during April I started to experience groinal responses when I looked at kids. I was terrified of what it could mean and decided to attempt two weeks later. The very next day I had those responses I decided to attempt. I didn’t really have the courage to do so at that time but I started experiencing images about disturbing things done to kids and as days went by it got worse. April 16 was the last straw and I couldn’t take it anymore. I ended up in a mental hospital but before I ended up there I had searched up what I was experiencing. That’s when I started to understand that it was OCD. I felt relieved for a few moments until I felt the urge to get more information. I saw lots and lots of things and many comments saying that it wasn’t normal and that people who went through this were disgusting people who shouldn’t be allowed to roam free. That’s when my anxiety and fear became worse and I tried to get rid of it but nothing worked. I shook the entire time I was awake, I didn’t have motivation for anything anymore, I just felt so disgusting. In the end, I’m so glad I ended up in that mental hospital or else I wouldn’t be here with my friends and family. Thank you for reading my story, I’m so glad that I’m not alone

Hiii! This is my first post. I found NOCD through a tiktok ad that spoke to me. It was titled signs you didnt know were OCD or something like that, and one of the slides was “checking my pulse throughout the day to make sure i was okay”. This is something ive done for i dont even know how long. atleast 10 years, im 24 now. Ive always known Ive had OCD. Light Sanitation OCD runs in my family. But over the years ive started to realize i had way more than the “family trait”. Checking my pulse 40+ times a day is something i refer to as my “OCD tick”. Its to the point where people who dont know about my “tick” often ask if i am okay when they see me do it. Maybe this post is me putting it on paper for the first time so i myself can analyze but some other stuff i struggle with are: Often having thoughts of if i dont do A, B will happen. An example that is common for me is “if i dont refold this shirt me and my boyfriend will get into an argument” or if im out to dinner with a friend, “if i dont pick up this cup and place it back down, i will get into a car accident on the way home”. This is one i struggle with almost everyday, especially when im around people (work or outings). This compulsion happens multiple times a day. Now in my life i try to practice exposure therapy, even getting annoyed i feel the compulsion and think to myself “oh my god this is so stupid no!” but if i dont follow through i feel guilty. often when i get my next compulsion shortly after i tell myself “okay doing this will make up for not doing the previous one”. I definitely dont have a number based OCD, but i would have to pick up and put down the cup until it feels “right” or “correct”- same with checking my pulse. I have to check my pulse until the feeling is “just right”. With sanitation as i said before, i have a very clean and sanitary family, although mine is more severe than their feelings. I avoid touching certain surfaces after i have washed my hands, such as the front door knob, or living room tv remote, etc. If i need to touch or use these things, i have to immediately wash my hands again. Even if someone comes home and asks me to go and lock the front door ill often respond with “i cant i just washed my hands, if i lock the door ill have to rewash my hands”. thankfully my family is very understanding. I often feel like certain things are contaminated. For example when i come home i sanitize my phone immediately as it is contaminated from being outside of my house. I often have a feeling of something having to feel “just right”. If i go out to dinner i have to be the first to pick what seat or side of the booth im sitting on before the rest of my family sits down or i will feel anxious the whole dinner. Sometimes when im typing i have to back space and retype the same word over and over until i feel i typed it “just right”- even if i didnt make a typo. sometimes when i am driving and space out i often think “oh my god did i just hit someone” when there is no evidence that i have. it worries me. I think oh my god i mightve done a hit and run. But tell myself it can not be possible, theres no police chasing me, no honking, or anything. It is scary. this one is very rare. once in a blue moon i get a false memory. A main one ive felt since i was a kid is if someone or some object touches any part of my body, for example my left arm, i have to have them or atleast my self touch my right arm in the exact same way or i feel uneasy. this isnt with every single touch, but mainly when i feel triggered- although i never know what triggers a moment where i need the symmetry. I guess ive always known, i am very honest with my family, friends, and boyfriend about it. But i didnt start to realize how neurodivergent i was until asking some friends “you never randomly feel *insert compulsion*?” and they say never in their life have they felt like that. Im very self aware and have come to an acceptance with all these things, although it is debilitating. Periodically i think, wow it must be nice to not live life with these feelings but oh well. To be honest, downloading this app is the first step ive ever taken to find out more about OCD. Ive always kind of just been like “yeah i definitely have OCD but okay” more or less.

Some background: I’m a woman in my 30s who’s been struggling to find the right diagnosis for years. Since 2022, I’ve had multiple psych hospital stays, and with each stay came a different diagnosis and different sets of medications: Bipolar II, CPTSD, MDD with psychotic features, “high functioning BPD,” and most recently, Schizoaffective Disorder (depressive type). Before all of that happened, I had been seeing a therapist for CPTSD and AuDHD traits for 2 years, but after they left the practice, I struggled to find someone I trusted again. Most of my breakdowns happened during my last relationship. Looking back, I was in survival mode with them, leaving who *I* am behind. I got to the point where I started doubting my own reality from the abuse. This eventually added up and landed me in my first episode of psychosis. That combined with my attempts is what got me my schizoaffective diagnosis. After finally leaving that relationship 1.5 years ago, I’ve slowly rebuilt my life: new town, new job, new friends. Many of my old symptoms (major ones) haven’t returned, which makes me believe I may have been misdiagnosed due to reliving past childhood trauma and stress responses from the abuse. Through all of this, I’ve felt like nothing ever truly fit. I journal, I reflect, I replay the recordings and I’ve even watched old vlogs –the puzzle pieces still don’t come together. It’s left me feeling like I’ll never really know what’s going on, and I’ve started to fear that my diagnoses will just keep stacking up without ever leading to effective treatment. Recently, I opened up to a friend about this. She mentioned that her neighbor went through something similar not exactly like me but she thought it would give me a starting point—multiple diagnoses that never felt right—until a new doctor finally identified it as OCD. That one diagnosis changed everything for her. It made me realize I really don’t know much about OCD beyond the stereotypes. I didn’t know OCD could involve intrusive thoughts, rumination, or mental compulsions. My friend encouraged me to look into it, especially as I start searching for a new therapist. Facebook and Google lead me here… So now I’m wondering: could OCD be a better explanation for what I’ve been experiencing all these years? Questions for the community: 1. What steps did you take to find out if OCD was what you were dealing with? 2. If you had a long history of misdiagnoses, how did you finally find a clinician who got it right? 3. How did you advocate for yourself when people dismissed your concerns? 4. Is there anything you wish you had done earlier in your OCD journey? Thank you so much if you made it this far. I’m really grateful for this space and just want to start finding answers and the right kind of help.