I have to admit, as a teen, I thought OCD was “being tidy”. Around the back end of 2019 I realised what I was going through for 5 years, was intrusive thoughts, checking, reassurance seeking, real events, perfectionism, pretty much a buffet of OCD symptoms. I thought I was just depressed and anxious and got diagnosed as such. Funny how I found it out myself online, after all the counselling, talk therapies, self medicating, nihilistic pursuits. Seeing one video on YouTube and the feeling of “that’s exactly what I’m going through”, and being brought to tears after 5 years of torture. It’s debilitating, but you’re all pioneers in helping so many other people recognise it’s no joke, and there could be so many people unknowingly going through the same - and maybe you can find a small bit of comfort in that.

If you are anything like me (and most of you are, because let’s face it, we are all on this chat), you have OCD. Real OCD, not the organisation, matching colours everyone thinks it is. Real OCD. I’ve always known I was different, known that my brain does some waking things and deep down, I’ve always known I’ve had OCD. But there is just something that changes when you finally get the diagnosis. It makes more sense, you have an explanation for your behaviours. So naturally I told my friends. When they ask why I had to stop and step four times on a tile I said ‘oh, I have OCD’. I finally had a word, a tangible concept that I could explain to people. But nobody warned me about the massive misconceptions about OCD. Instead of support or acceptance, my friends seemed to question the diagnosis saying ‘that’s not ocd, don’t you just like things organised?’. And no matter how much I explain it they don’t seem to get it. And that’s the part that feels so cruel. I go through hell in my head and it can all be reduced to a phrase of ‘oh, aren’t you organised’. So please be careful out there you guys, and if someone try’s to downplay your experience, know that you are valid and that what you are going through is probably something that they could never handle. It’s a lesson that took me time to learn, but it’s important because our experience matters. Our real experience.

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.

Hi NOCD community, I wanted to share my story of my journey so far with OCD to provide perspective to anyone who needs it. I can't believe how far I have come with a huge part because of my NOCD treatment and utilizing ERP. For reference I am a 24-year old male, so for anyone who is like me and on the fence with treatment, trust me it is worth it. If you ever want to talk about OCD and are not sure where to start or need guidance please do not hesitate to reach out to me. I am now almost 2-years into treatment and working on recovery to this day. Sending my support to all. My OCD Story Adolescence Growing up, I didn’t know what mental health was—or even much about who I was. I was somewhat consciously aware, but something always felt off. My life seemed surrounded by reacting to fear instead of exploring or discovering like a regular kid. It felt like there was a switch in my brain that never let me settle in. My earliest compulsions were more physical than mental. One example that likely went unnoticed was how I would obsessively organize and align my toys in a certain way. It may have seemed like I was just being finicky, but now I recognize this as an early sign of OCD. The key is understanding that anything can become a compulsion—it’s not about what you do, but why you do it. In my case, it was always to avoid a bad outcome or neutralize a feeling. Another moment that stands out was in preschool during a performance. I was reciting something I can’t remember in front of an audience—a common childhood fear—but the way I coped was by repeatedly hitting myself in the head with my fist. I wasn’t aware I was doing it, but it calmed me, even though inflicting pain had no logical connection to the fear itself. Looking back, this was clearly a physical tic. My dreams were disturbing too. I’d experience that terrifying space between sleep and consciousness. My parents once had to put my limbs in ice just to fully wake me. And even the process of going to sleep became ritualistic. I had to jump into bed using my left foot, pray a specific way (including naming everyone I didn’t want to be affected by harm), rotate clockwise, shake my pillow four times, and do various actions around my room—cleaning, checking the door, and more. All to prevent the visions in my mind from becoming real. Teenage Years Though my childhood was tough, things really escalated in high school. My family life was chaotic—divorce, shifting homes, and being the older sibling trying to hold it together. I was smart and creative, and I found joy in creative writing, fantasy books, cartoons, video production, and drawing. But the storm really hit freshman year of high school. I was bullied relentlessly—for being shorter, having low self-esteem, and dealing with an undiagnosed mental illness. One night while trying to fall asleep, I noticed my heart beating fast. I panicked, convinced something was wrong. My dad said it was heartburn and gave me soda (caffeine), which only made things worse. I slept maybe an hour, and we went to the ER the next morning. After a full workup and an EKG, the doctor concluded I was physically fine and gave me anti-anxiety medication. But that wasn’t the end. I had more episodes. I became obsessed with the idea that something was wrong with my body. I had blood drawn thinking I had a thyroid issue. I panicked at doctor’s visits, which spiked my blood pressure, fueling more health fears. I was also in an advanced biology class, learning about diseases and cancers—which triggered me to the point I felt like I was going to pass out. Motion sickness and vertigo became a daily fear, and I became terrified it would never go away. That became a core theme in my health-related OCD and deeply affected my quality of life. It was also during this time I developed HOCD (Homosexual OCD). Intrusive thoughts about my male friends consumed me. I couldn’t relax around them or enjoy hanging out. I compulsively told myself I was straight, watched porn to “test” my reaction, and mentally analyzed everything I thought or felt. It was exhausting. It chipped away at my confidence, especially with women, though I know other external factors played a role in that too. Still, I had no education around mental health and assumed this chaos in my mind was normal—or that anyone seeking help had to be “crazy.” I couldn’t have been more wrong. Adulthood Despite all that, I managed to graduate high school with good marks—even finishing at a new school I attended for just eight weeks after moving in with my mom. College was a major turning point. For the first time, I experienced independence and the ability to sit with my thoughts. I still didn’t know what I was dealing with, but being away from a broken home and forging my own identity was incredibly freeing. Freshman year felt like a fresh start…until the pandemic hit. Like many others, I was forced to return home. For someone with OCD, the sudden lack of control and isolation was devastating. I was trapped in my room, stuck in my head, with nothing but virtual classes and uncertainty. Still, I eventually got back to campus, focused on my career in the sports and entertainment industry, and was accepted into a prestigious program while working multiple internships and completing challenging coursework. But with roommates and stress came new obsessions—and still, no diagnosis. I eventually sought therapy for anxiety, realizing my mental state was unsustainable. That’s when two of my most distressing OCD subtypes emerged: Staring OCD and POCD. They worked together in the worst way—fears of inappropriately staring at people, especially children. It felt like I couldn’t exist in public without fearing I’d harm someone just by looking at them. It shattered my self-worth. I couldn’t enjoy life, couldn’t even look in the mirror. The guilt and shame consumed me. I turned to talk therapy, where I was diagnosed with severe anxiety and depression. While sessions brought momentary relief, it quickly became clear I wasn’t getting better. In fact, the act of confessing my thoughts—seeking reassurance—was fueling the OCD. Still, I didn’t have the language for it. After doing my own research (a compulsion in itself), I discovered POCD and Staring OCD. For the first time, I read stories that sounded exactly like mine. I brought this to my therapist, but they dismissed it. Unfortunately, OCD is still widely misunderstood—even among professionals. Because I didn’t fit the “cleaning and checking” stereotype, I wasn’t taken seriously. In 2023—just two years ago—I found NOCD, a teletherapy platform specializing in OCD. I scheduled a free consultation, thinking “Why not?” I was miserable and desperate for relief. The therapist who evaluated me confirmed: I had OCD. She administered the DSM-5 criteria and said I was a textbook case. This was the turning point. Through NOCD, I finally received proper treatment with Exposure and Response Prevention (ERP). I learned how OCD functions, how to track and reduce compulsions, and how to sit with discomfort instead of running from it. It took time—5 to 6 months before I noticed true change—but for the first time in my life, I felt heard. I wasn't alone. NOCD gave me a judgment-free space to unpack the most disturbing thoughts and to not be defined by them. I won’t sugarcoat it—this journey has been painful, frustrating, and nonlinear. I still live with OCD every day. But now I have tools. I’ve continued treatment with multiple NOCD therapists, joined support groups, and practiced exposures: scripting, imaginal scenarios, response prevention, you name it. I’ve learned to live with uncertainty instead of trying to solve the unsolvable. The biggest lesson? Stop trying to figure it out. OCD is emotional, not logical. The moment I stopped trying to outthink it and changed my relationship with it, everything shifted. Today, I’m not “cured,” but I’m grounded. I’m more myself than I’ve ever been. And now, I want to give back. I want to share my story so others know that they’re not alone—and that OCD doesn’t have to rule your life. Whether you're 14, 24, or 44—there is help, and there is hope.