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Something’s not right

Lise07
Senior Contributor

I've never *really* been diagnosed, and now it's bothering me

So, apologies right off the bat because this is going to be awfully close to reassurance-seeking behaviour but I do want some other opinions. I've had OCD-like symptoms since I was about 10 years old (following some significant trauma) but I kept them secret from everyone I knew because I was deeply ashamed. At the time I thought I must have had a kind of phobia because I was afraid of touching "contaminated/dirty" things which were mostly objects I encountered at school. I wasn't actually afraid of dirt or germs though - the "dirtiness" was more abstract - but I distinctly remember thinking of things that way. It got to the point I couldn't walk into certain rooms at certain times of the day because e.g. I'd previously been in there wearing a shirt that I was wearing when I touched a "contaminated" object so the room was therefore now contaminated itself. I had a mental heatmap of every room, chair, surface, and doorknob in the house categorised by levels of contamination. If I came into contact with one of these objects at the "wrong" time I'd feel like my skin was being invaded with those scarab beetles from The Mummy and I'd panic. I was severely distressed by all this but even more distressed at the thought of anyone else finding out so I kept it under wraps. This fear of being found out lead me to reading about phobias and exposure therapy, so in desperation I applied it to myself. It too maybe 6 months until I'd reached a point where it wasn't affecting my daily life so I shut the struggles of the previous 3 years in a big box in the back of my brain and vowed to never look at it again, and certainly never to speak of it. Jump to 15 years later and stuff starts leaking out of the box. I had accidentally glanced at an article about OCD in my early 20s, got a few paragraphs in before thinking "fuck that's me" and throwing the magazine away because I didn't want to think about it. The first things I read after finally acknowledging I should do some real research hit me like a tonne of bricks. It was horribly painful to read but also helped put a lot of pieces together - the contamination fears, random violent thoughts I often had that lead me to doing endless research about sociopathy, needing to count my steps when anxious, rules around food/disordered eating etc. that had caused me suffering at different times in my life but I'd never connected them before.

 

I spent months researching (hello doubting and reassurance) before finally talking to a professional. When I did I straight-up said that I thought I had OCD (+ depression at the time). That was several years ago and I've now moved countries and cities a few times and have spoken with different therapists and doctors. Of all the people I've seen, I've never *not* said what I thought I had, which I now realise is...problematic. No one has diagnosed me with anything before hearing my opinion, although no one has really challenged me on it either. Due to the moving countries thing new doctors don't have access to old records either, so they don't know what anybody else did or did not diagnose.

 

So NOW of course my stupid brain is like "you don't actually have OCD you just think you do. All your current obsessive thoughts have just been implanted there by the power of suggestion". I realise the ridiculousness and meta-ness of these doubts too. Sorry for word-vomit. I hadn't planned on such verbosity when I opened this thread.

 

TLDR: no doctor has ever told me I have OCD without me announcing it to them first and I'm now bothered by it. Do I have to directly ask for an opinion from current doctors? Find someone new and go from the top? Please note I'm not asking for people in this forum to diagnose me, just opinions on what I should ask of doctors.

9 REPLIES 9

Re: I've never *really* been diagnosed, and now it's bothering me

Hi @Lise07 Welcome to the forums. Sounds like you have a lot of insight. It also sounds like getting an expert opinion could help you make more sense of what you've experienced. Re Drs - such a mixed bag. Have you seen a psychiatrist? It would be worth getting a referral and going in without any labels. Even if the referring Dr states their opinion, psychiatrists generally start from scratch. If you start by saying that you've struggled with difficult thoughts, feelings and behaviour for a very long time and you're trying to make sense of it, hopefully they'll be able to ask the right questions. It took 30 years before I was diagnosed correctly. After the initial shock (read disbelief, denial etc.) it has been useful in terms of making meaning out of my mess. All the best with it.

Re: I've never *really* been diagnosed, and now it's bothering me

@Lise07 Hello. I would like to start by saying I am not a doctor and so of course cannot diagnose you. However I do have sever (diagnosed) OCD and a lot of what you are saying sounds like OCD to me. It is a super distressing thing to have to deal with and I would suggest if you are worried when you go to see your new doctor instead of saying "I have OCD" maybe try just explaining your symptoms like telling them what things you have to do and why. Then they can decide and you are still telling what is going on. And you can always ask what they think at any time. Good luck. 

Re: I've never *really* been diagnosed, and now it's bothering me

@Lise07

I think it's perfectly rational to want a definite diagnosis & to see whether you stating you believe you had ocd affected how they diagnosed you. 

Why not ask your current treating psychiatrist whether he/she believes you have OCD and what markers they have identified to come to that conclusion. 

It's perfectly fine to tell them you're worried that you influenced the diagnosis. 

Re: I've never *really* been diagnosed, and now it's bothering me

@Lise07 How have you been? Did you get a diagnosis? I was diagnosed with Pure O OCD  7 years ago if you ever need to have a chat i am here 👍

Re: I've never *really* been diagnosed, and now it's bothering me

Thanks for the message @AnxiousMe. I haven't had the opportunity to ask a psychiatrist yet. I'm on holidays with my mother, partner, and my partner's parents so won't get the chance until after Christmas.

 

I'm currently better than I was when I started this thread; hopefully I can maintain it despite the next few weeks of stress.

 

 

 

 

Re: I've never *really* been diagnosed, and now it's bothering me

@Lise07 That is good to hear 🙂 

if you ever need to talk about OCD im just an @ away haha i have read alot about OCD and anxiety because of my own experience 

You have a Merry Christmas 😊

Re: I've never *really* been diagnosed, and now it's bothering me

So have I - I went from steadfastly denying it to needing to read EVERYTHING about it. I guess that's pretty typical of our people Smiley Very Happy

Re: I've never *really* been diagnosed, and now it's bothering me

An update, just in case anyone was dying of curiosity Smiley Tongue: I went to see someone new and started from the top, trying to be completely honest. Instead of presenting a description of myself in which I already understood everything that was going on, I simply blurted out everything, even things I do or think without having any idea why and which I am ashamed about. 

 

The conclusion is that I definitely have OCD (unsurprisingly), but that I also have BPD (which I was in stubborn denial about). I feel a mixture of relief and grief, which I suppose is quite normal. 

 

Thank you all for your advice. It took me a few months to get around to doing but I did it in the end.

Re: I've never *really* been diagnosed, and now it's bothering me

@Lise07  I am glad you at least have some answers now. it can feel very weird recieving a diagnosis even if you knew you had the issue but it does make it more 'real' and it is a very strange feeling. hopefully now you can start to feel better. 

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