Would love to hear from others

I recently found out that I have OCD and it was honestly an enormous relief. I spent nearly ten years having been diagnosed with generalized anxiety and depression, receiving incorrect treatments and trying to apply coping mechanisms that were actually making things worse for me. You may think that this would make me angry to think I could have been on the path to recovery sooner and wasn’t, but I’m honestly just thankful to finally know. When I read NOCD’s list of subtypes, my jaw was on the FLOOR because it felt like half of the article was written about me. The only time in the last decade I felt I found something effective was an audiobook I found on my own about intrusive thoughts which used a technique very similar to ERP. Go figure. Anyway, I had a couple of questions that may be cathartic or help others be reflective. First, who else was misdiagnosed? How long? What was your treatment experience like and what was your reaction when you learned the truth? Share as much or as little as would be helpful to you. Second, were there ancient signs you suddenly started remembering that now make way more sense? For me, it was sensorimotor and existential OCD. In high school, I had an extended phase where I couldn’t stop paying attention to how much I blinked and also had a phase where I could not stop questioning reality and your classic existential questions. I also had a period in college when my eye floaters drove me absolutely nuts every day. Anyway, hope you’ve come across this feeling well and I’d be happy to hear from you.

Eeeeva

Date posted: 2d

getting the formal diagnose and feeling seen is huge!! i had sooo much more shame and secrecy prior to understanding that I have OCD. I thought I was just crazy and it was too triggering to try to tell anyone what i was experiencing. I've had OCD symptoms since I was probably 5 years old - some of my earliest OCD memories are patting the opposite side of my head to "even it out" when my mom was brushing my hair. I also used to have to say "excuse me" 10-15 times whenever I burped to make up for all the times I burped when I was too young to know I should have been saying "excuse me"" lol. Glad I that one passed (except I sometimes still do repeat it in my head, now that I think of it!). I received my formal diagnosis at age 30 after some very rough years in my 20s. Better late than never! I'm curious how you moved past the eye floater obsession? I currently can't get over the stupid ridges between my bottom teeth. My tongue probes it all day long and I don't even get satisfaction out of the feeling. It drives me crazy and I can't stop! (I realize this is more of a BFRB rather than OCD, but the hyperfixation of it seems related)

rjaftp

Date posted: 2d

@Eeeeva That’s wild you can remember those examples all these years later! I can’t remember anything that far back but something may come to me (I’m new to this), I only remembered the blinking and floater things this week so I may have to think about that. I was probably 14-15 with the blinking one. For the floaters, simple as it may be, I think what allowed me to move on from it is that I was no longer staring at whiteboards in classrooms after college (they make them stand out more) so I just stopped noticing them as often and moved on. Some are easier than others lol

NatSwai

User type: OCD Conqueror

Date posted: 2d

I actually had a therapist mention OCD when I had my first major theme at the age of 11. They never fully diagnosed me nor did they encourage my parents to seek diagnosis and treatment. Pretty frustrating. So I got formally diagnosed here at 25

rjaftp

Date posted: 2d

@NatSwai That sounds frustrating, I’m glad you finally have some clarity. Honestly pretty similar timeline from onset to diagnosis as me. I never once even had OCD mentioned to me by a treating clinician. It first came up from a psychiatrist earlier this year who was doing an informal review of my medical records and I didn’t take it seriously when I first heard it bc I genuinely hadn’t heard it mentioned a single time as a possibility.

Spencer Z

User type: OCD Conqueror

Date posted: Yesterday

Never had misdiagnosis, rather a lack of diagnosis. My psychiatrist and therapist I had in high school never diagnosed me with anything other than noting I have anxious and depressive symptoms because they didn't want "to put me in a box" despite the fact that I couldn't function at all for the first half of high school. OCD would actually be my first formal diagnosis after switching my mental health team when I graduated high school. Not the same problem as others, but I do relate to not getting proper attention by professionals until years after it started. In retrospect, yeah, I can recognize OCD symptoms since at least 4th grade. Interestingly it started with music earworms that I couldn't get out of my head, so I compulsively listened to other music which made the earworms worse. Since 6th grade I've had various forms of Pure O-OCD, such from 7th-12th grade, I believed leaves and other objects around where I was walking were stealing my thoughts so as a compulsion, I had to step on whatever was supposedly stealing my thoughts to get the thoughts back. I also had a crush I had ROCD with despite not actually being in a relationship with them at any time (which can happen with ROCD, it doesn't have to be an actual relationship but rather a perceived relationship).

rjaftp

Date posted: Yesterday

@Spencer Z Appreciate all the detail, I feel that has effectively the same effect as misdiagnosis but it’s more like a refusal to diagnosis which seems odd at best. If someone treating mental health symptoms views a diagnosis as putting someone in a box, they probably aren’t fit to treat, as it seems they’re stigmatizing a diagnosis before even giving one. It’s amazing the level of clarity you can have on past experiences when you realize what has actually been going on. I wish I knew at the time, but it’s satisfying to finally have an explanation for it. Wishing you the best moving forward!

brownie816

Date posted: 21w

Wondering if OCD Could Be the Missing Piece?

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.

Optimistic

Date posted: 19w

Feeling overwhelmed by diagnosis

I am newly diagnosed with OCD as a 33 year old female I was fat oses with bipolar at 15 and never really identified with it much and totally relate to ocd. I wish i would have known long ago so I could have gotten treatment earlier. Now that I know and am aware and can see what’s off and what are compulsions and my insatiable need for reassurance it’s so overwhelming- it feels like my mind is a prison and attacks me with a new pure o quest as soon as I wake up I’m optimistic I’ll be able to get better but it just feels like it’s time sucking and joy stealing disorder I know I’m not alone here I feel like a crazy person replaying and replaying things I want to know if you can relate or if you have been at this for a while and actually feel like you are breaking free from this Thanks for the read

bumblebeee

Date posted: 18w

I’m newly diagnosed and trying to find my ground

Hi! I have just recently been diagnosed with OCD and it’s come as kind of a shocker to me. My friends aren’t that surprised (most of them are psych majors lol) but my parents/family are very skeptical and have been telling me that it’s just anxiety. I was diagnosed with general anxiety disorder and severe depression when I was 14. I’ve had hydroxyzine NPR since then and I’ve tried lexapro and propanalyl (both made me feel like i was going crazy) and then was misdiagnosed as having bipolar 1 (hypomania). I finally have found a therapist that specializes in OCD and we did the assessment and concluded that my anxiety/depression has stemmed from it. Most likely I have experienced my OCD symptoms since I was 11 (when my anxiety first appeared) and I am now 21. I mostly have obsessions, but I do have a few compulsions. Most of them relate to my personal space or social settings. I have a good amount of driving anxiety as well and I have a set route for every single place that I drive to regularly. I have a set morning routine that I am only comfortable with being disturbed when I have had ample time to prepare myself for a change. This new diagnosis and learning what it is and what the different types are has kind of uprooted my social life and drastically decreased my mental health. I guess I’m here to try to find some balance and some people who actually understand what it’s like to feel like there’s something wrong with your brain and no way to “fix” it. I’ve tried talking to my friends/bf/family and none of them truly understand or could even begin to imagine what it’s like inside my head. I’m just trying to find my bearings and feel the ground under my feet, but I don’t exactly know where to start.

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