My (second) diagnosis, and why I’m so angry

Hi. Welcome to story time. Back in 2019 (wow, long time ago) was the first time a doctor first mentioned the possibility of me having OCD. I was 19 back then. During childhood, my mom would call me “impressionable”. Anything could trigger me into a spiral of crippling fears, and I had rituals to try to escape them. At 13, I started picking at my skin. It was mainly about need for perfection, and when I felt I couldn’t achieve it, I hurt myself. I had bad acne that triggered me into picking a lot, and even worse things, like I needed to expunge the “imperfection” out of me. Doctors never took it seriously. They wouldn’t even treat my acne because they’d say my problem was only my habit of hurting myself, but then they’d send me off with a “just stop doing it”. I never stopped. I hated myself. I hated myself for how much I felt things, so uncontrollably in a highly sensitive and even irrational way. I’d pick at my skin for hours on end all throughout my teenage years. At 19, a neurologist casually mentioned to me that skin picking could be related to OCD. The ground seemed to shift beneath my feet. He sent me off with antidepressants after 10 minutes of appointment at best. I was just left with this piece of information and no guideline at all, no afterthought about how that might affect other pieces of my life. I found this app and started engaging myself in every discussion trying to piece together what I really had and what was going on. Ironically, anything OCD related became my obsession. Then I went to a psychiatrist, and he brushed it off saying I only had bad anxiety. A really shitty therapist I was seeing at the time told me very rudely that I was only trying to justify my bad actions by blaming them on a possible disease. So I told myself to forget all about that previous nonchalant and catastrophic diagnosis, but still took my meds and went on. All was fine for a while, until it wasn’t. Because things never truly went away. I still couldn’t understand why I reacted to things the way I did, and how to make it better. I then started thinking I might have ADD – grasping onto anything that might explain my chronic procrastination, getting stuck in my head so intensely that I block everything out, and my need to move my hands (essentially picking at my skin). At this point, I’d been to other four psychiatrists. One of them only listened to me for like 5 minutes then told me I was really exaggerating and took me off my meds. I went through a really dark hole. After a while I got to another one, he listened intently, and finished it off with “I don’t believe in diagnosing people but you seem to be going through it”, and gave me another prescription. The third one followed that same line, but asked me to consult with a neuropsychologist. So there I went. 10 stupidly expensive sessions later, she tells me I’m too depressed for her to really assess if my lack of attention is really ADD. But, yeah, the tests indicate severe OCD. I thought it was funny at first – I mean, too depressed for a diagnosis, I guess –, then I was relieved. Ok, so it wasn’t all in my head. Then I was pissed. So, so pissed. Because for years and years on end no one had the guts to tell me what I’m convinced was very obvious to any trained medic. I mean, except for that first guy, who said it in a way that made it feel like he was telling me I had cancer then sending me off with some aspirins without even saying where the tumor was. For years, I’ve had so much pressure, from others and myself. That I could make myself less miserable, I just didn’t! Just stop hurting yourself, how hard can that be? Just stop obsessing over every little thing. For god’s sake, don’t apply enough insect repellent to get intoxicated or worry about every little bug around you until you’re unable to do anything except trying to get rid of them, what’s wrong with you? Just let go, be happy! Not to mention the crippling, ever-present GUILT for not being able to do so. For years. And even now, the doctor just told me the fact and sent me off. She never tried to discuss with me what part of my habits, feelings and thoughts might be OCD related, to the point where I still feel like I made it all up and one thing has nothing to do with another. Some part of me is relieved – there’s a reason for all of this. It takes me closer to embracing myself. Another part still feels like I was ditched in a dead end with no directions out. I have no idea what “type” of OCD I have and how to figure it out, and no one seems to care enough to try and help me understand. This was long and angsty, so thank you so much if you took the time to read my senseless rambling. Just desperately felt like I needed to share ♥️

Xwi

Date posted: 1y

Hi, thank you for sharing your story and I know how you feel 😊 I always felt like I was different to others and I had my first rituals at 15 playing video games and I had worse symptoms as the years went by and this year I was diagnosed with severe OCD with secondary symptoms 7 years later and I felt so relieved because I knew that how I was acting wasn’t all in my head but also annoyed because like it’s been this long and now is when I find out I had OCD like 😂

Villonr

Date posted: 1y

It's so frustrating! Thank you for reading and also sharing <3

gixmo

Date posted: 1y

This sounds so familiar. I am sorry you had to go through this. The first time I was diagnosed was 2005 and I had the same experience. Not one inch of movement towards treating it. Your example of aspirin for cancer is pretty spot on. Thanks for sharing, best wishes for better days ahead.

truetrev

Date posted: 23w

An Intro to Trevin

Hi everyone, My name is Trevin (24,male,he/him) and I’m new to this app and this is my first post. Here’s how I’m feeling today: OCD frustrates the hell out of me. Mostly when it becomes hard for me to comprehend. A few weeks ago I had convinced myself I have Huntington’s Disease (or will have it in the future). I was reading symptoms that overlap with how I was feeling at that time, and started drawing connections to my life. Some large connections, like my grandma who has parkinson’s, and my psychiatrist augmenting my SSRI with memantine, fixating on “what it means” for me, a young, healthyish individual to be on an “old person” drug. Some longshot connections linked to Huntington’s, like my above average intelligence and large head size. Each symptom I found that “clicked” my OCD made the anxiety ramp up. I shut this down fairly quickly as I could tell it was unrealistic and it felt very clearly that it was OCD. However, on days like today, my OCD is a much more undefeated beast, not dissimilar to a Rancor. Unfortunately I am not a Jedi. Today, my OCD just feels like nothing feels right. I feel like my entire perception of the world is different today. I’m drowning in it. The sky looks different, the coldness against my skin feels more piercing than it normally would. My thoughts just feel like a whirlpool, like I can’t place a finger on a single thought I have. They are moving fast and swirling like a galactic orb or nebula. Everything just feels “off”. And that makes me frustrated and angry. I feel like I have no control of myself. TLDR; I fucking hate this disorder. And I hate its name too. More often than not, I don’t feel like I have an obsession or compulsion. It’s just a feeling or perspective distortion. Maybe a better name for OCD is Control & Doubt Disorder, or Obsessional Uncertainty Disorder. I hate searching OCD online and it simplifying the hell out of it: “Obsessions that lead to compulsions”. Girl, I wish it was that fucking cut and dry and easy to delineate. I still insist to my psychiatrist that I have a different disorder in addition to OCD, because what I feel doesn’t “feel” like OCD. They, of course, insists that this is OCD about OCD. Ugh, frustrated, whatever :P Thanks for reading 🫶🏻

Whit.D25

Date posted: 22w

1st post-What my OCD experience feels like. Pt1 Ig

I’ve come to a point in my life where I can be very happy. I have a safe environment, a loving community. Yknow I’ve really healed through or moved on from a traumatic past and as I say to my boyfriend from time to time like a broken record: I feel like nowadays the only thing bringing me stress or at times misery is myself. I am a fairly joyful person, when I’m comfortable I’m very goofy and like to sing dance and have fun. I find that I relate to so many amazing people I meet that are the nicest, most fun, elevating individuals, who also struggle with the hardest sometime debilitating things. It truly sucks because when I find those moments of peace I see the power of what an ocd mind could be as a person. We are people who may over analyze, but I myself also always find the good in people. And aye if in a moment I don’t think anything is doomly wrong and if I don’t try to understand it I may parish 😅 then that moment feels like the best one in the world. But on the other side of that when I’m not in a quiet mind moment and I’m left with myself to take control of what life in front of me looks like in or around me. I almost have been crumbling. Like I said at the beginning of this story here, the life around me is not so situationally stressful. And it’s also fairly simple. My boyfriend and I live together in a small cozy trailer with our two cats, he works full time very hard and I work part time where I spend as much time as I can working and then have a few days around the house. We’re saving for a home and are quite content with our lifestyle at the moment with work and being “lazy”, or resting and going out for fun now an then on our time off together. Most times though I do have day or two off during the week by myself, which usually goes one of only two ways. Like I said before I do like to work hard, especially now that I have a part time job that’s fairly easier than others I’ve had in the past. So I work 6-7 hours then drive home, air up my tires and wash my car sometimes because I like doing something after work while I still have energy.Or I go to the store. Come home make food, prolly nap and not really worry about too much because I’ve worked all day. But on my days off. I find myself waking up with a lot of anxiety. I usually fight it off by going back to sleep. But my OCD is heavily circled around shame. Even though I only sleep in till 10-11, 12-1 at the latest. I find myself thinking about how wrong (in nice terms) it is to do that. And the funny thing is the older I get (I’m a 21F). I’m not as pressured by this thought, even though it’s still stressful it literally just feels like a thought I can’t escape from. To put things in simple terms. I truly psycho analyze my actions breath by breath and my intrusive thoughts are critiquing those actions bit by bit. I’ve recently have started medication and it was a tremendous difference in the beginning and it helped me cope with the acceptance and letting go (f it or just care less) of those thoughts. But let’s say I forget to take it, or I wake up one morning by myself all day and I’m super tired or unmotivated. That day will feel truly debilitated. And now I’m definitely to the point where I’m battling that, but also have a thin vale behind that where I now know what is going on. And the thoughts are shameful for “not trying to get better or be better” Because I do Like I write a lot, and it truly is one of the best coping mechanisms for working through intrusive or obsessive compulsions. I could also write all day, and if I don’t listen to that ease of the anxiety from writing. And try to keep going the writing will turn into a compulsion itself I feel like I should not stop or critique it as well. But luckily I’ll hopefully find my place in explaining the cycle of what I do when my brain is very loud about things. The next time it’s too loud:)

Anonymous

Date posted: 16w

10 years in.

Hey folks, I know I shouldn’t post here and I know what I’m looking for when I do but I just feel so at a loss and OCD is playing the old trick of telling me I don’t have it which I guess is what it’s been doing for a while. My OCD started with a health obsession when I was 12 (I’m 22 now) but went away after a couple of months but didn’t present itself again until I was 17. I thought I had a degenerative disease and struggled with that day in and day out until I eventually accepted that I was going to die and made peace with it and then of course I kept living. OCD was pretty quiet for a few months after that. It would show itself when I had headaches and random aches and pains but it never hooked me as bad. Quite funny actually but I had a weird thing for a couple of months where every time I would go out for a drink I thought I’d wet myself so I’d stand in the bathroom for like 20-30 minutes at a time and that was multiple times across the night. Then in 2021, the theme shifted. I remember it distinctly, I was just lying in bed and a question appeared and that was it. My anxiety was really bad for about a year and then I met my girlfriend and we started dating. OCD went quiet until she moved to another city for university and I started to worry she was being unfaithful or didn’t love me anymore and things like that. With that obsession it kind of came to a head where I realised I either had to fully trust everything despite any doubt I felt or I’d lose her and so it just eventually started to pass. I’ve had a few occasions where I question my love for her and that really hurts because I’m pretty sure I’d be lost without her. That comes and goes though and it usually has to do with a general numbness that I feel after an OCD spike. The theme from 2021 (which I won’t say because I’m somehow worried that someone I know will see this and I will definitely wonder if people near me have seen this post despite it being pretty closed off.) never left but I was somehow able to put it to the back of my mind and get to a point where I was okay. I got a new job in 2024 at a point where I maybe was not ready. New place, new people and for the first 2 months or so it was fine. I even saw some potential triggers before they happened and did my best to ignore them. I got really drunk on a staff night out and when I woke up a lot of what ifs filled my head and I’ve been on my back since then. That brings us to now, my OCD has been pretty bad for about a year now but the weird part (and what I’m making this post about I guess) is that it feels different this time. I know that’s a super common phrase for people with OCD that therapists hear all the time and I have actually taken that piece of information as reassurance a few times over the years but it’s true. I feel so much more confused. I can’t even really explain it. It feels like my brain doesn’t engage or deny the obsession the same way as it used to and of course that makes me believe it’s real and I never actually had OCD. Instead, I’m left with thoughts that don’t give me that sharp feeling of anxiety that they used to and instead just leave me feeling super low and often angry just wishing it would go away. I think it’s probably because I’ve been at this for so long and had the same theme for years and so I’ve in a way habituated to the anxiety and that’s what rationally makes sense to me but like you all know, you can’t reason with this thing. It’s like it gives me just enough anxiety and depression to keep me on the hook and make it feel real but not enough send me into panic like it used to. I used to lie in bed, unable to get up and wishing that I was dead. I guess that now because I don’t feel that way, at least most of the time, my ocd is using that as a way to tell me I never really had it. Also I think I used to rely so heavily on reassurance but now know that I shouldn’t have it I try to avoid it. Without it though, it all feels real and I feel like eventually I will lose myself fully and that’s a fear that makes me feel unfathomably hopeless and makes me dread the future when I used to have dreams and hopes for myself that I looked forward to fulfilling. I don’t want to be big-headed, I just genuinely feel like I could’ve had a really great life and that’s gone now because of this thing. Anyway I just wanted to kind of use this post to get my head straight and map out something that I couldn’t quite explain effectively in therapy. I appreciate everyone who sees this but ask not to give me reassurance, I know we all empathise with each other but I’ve been at this long enough to know that it does none of us any good. I hope everyone is doing well, keep your head up. They tell me there’s a light at the end of this tunnel.

Be a part of the largest OCD Community

Share your thoughts so the Community can respond

My (second) diagnosis, and why I’m so angry

Related posts

Be a part of the largest OCD Community

Be a part of the largest OCD Community