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 everyone, my name is Kendal and I am new here, although I do not believe I am new to OCD in the SLIGHTEST. Im about to leave my 20s behind and begin a new chapter of my life. Everyone says your 30s are suppose to be the best right? I am proud of myself for making a huge step forward, before the beginning of this new chapter. I’ve been experiencing symptoms of OCD for as long as I can remember. These feelings, thoughts, compulsions have been existing with me since middle school. They’ve manifested in many many different ways throughout the years, and continue to evolve as I get older. I’ve experienced emetophobia, obsessive thoughts about passing out or getting sick in front of people, contamination OCD, white coat syndrome and the newest culprit… Harm OCD. In middle school, it was extremely hard to understand WHY I felt the way I felt, and experienced the intense anxieties that I did. Over the years I kind of just put up with these thoughts and feelings of uneasiness.. and thought it was just regular ol’ anxiety. Recently the harm OCD came through, triggered by a traumatic event. Lemme tell ya… if you’ve ever experienced harm OCD… I am terribly sorry. It’s absolutely horrifying. It scared me so badly, to the point of actually seeking professional help. During that extreme anxiety inducing time, I was also terrified to tell a professional what was happening to me. I started with telling my husband first. What a RELIEF! I learned that telling someone made me feel so much better so I thought, man… I wonder what telling a professional would do for me? RELIEF!!!!! She helped me realize that yes this is a very very real thing people experience daily. She’s suggested therapy to pair with medication. I’ve given the medication about a year to do its thanggg and goodness, what a difference. I wish I got help earlier but hindsight is 20/20. This is me, now ready to implement therapy. I’m ready to gain a better understanding, collect coping skills and chat with people who have had similar experiences. Thinking you’re alone in OCD is incredibly isolating and scary. I am happy to finally realize I am not alone.