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It's been a while since I posted here. I used to post here a lot in 2013 and 2016 and 2017. I have had huge struggles with intrusive thoughts, magical thinking and rituals for most of my life. I think the time I posted here I felt at some point I was really recovering and in the latter years that I was in a really bad place. In 2018 my life got completely turned upside down. I was probably at my worst at the time and I got an appointment with the only OCD specialists in my area.

I was called in to an appointment and I was so excited because it was something I had dreamed of for years. When I got there I completely freaked out and didn't know what to say to them. I felt really put on the spot, but I was really hoping we would take it slowly and I could dig deeper into a trust relationship where I dared talking about my intrusive thoughts. Before I even got to say anything it was concluded that I didn't have OCD. I was devastated. I was shaking for months and I didn't know what to do at all. I was 28 The thoughts and rituals had taken up about half of my life. And at the time I felt like now my story and account of my own life was taken away as well and I had lost my own life twice. Afterwards the intrusive thoughts got even worse and I was a mess basically. Four months later I was given a new therapist. In the meantime, I started thinking "what if they're right? what if I've never had OCD and I just made it up?" , I had had similar thoughts before, but they were never verified by proffessionals before and I would start obsessing about this most of my woken hours. At the times that I would get my occasional old intrusive thoughts I'd feel relief rather than the usual anxiety and at that point everything is turned around, because at that point they don't really stick, which only brings more doubt. When I started seeing the new therapist, I started feeling that I was only there for reassurance that I did in fact have OCD. I also started wondering if I had miracously recovered and wondered if recovery felt that horrible. After some session where we got nowhere I was told it didn't work and I couldn't go there anymore. After that I started shaking  a lot again and it felt like some sort of crisis that there was just no solution  to. I would several times try to see new therapists, but they would tell me to stop wasting their time. Which would just crush me even more. After some trial I found a therapist that did take me seriously at least, but I still felt as if I was only seaking reassurance. He did say that I had OCD because of my intrusive thoughts, but that it wasn't very severe. He also said that I suffered from depression and social anxiety. I felt a little reassurance for a while, but realized I didn't fully believe him so the cycle started again. I suppose it's the corona that virus that has made this all worse. 

I did something rather stupid, before I went to see the OCD specalists. I was so excited of finally getting help that I decided to give up everything else in my life and just focus on recovery, something that in retrospect seems very stupid. It made the rejection feel like even an even harder blow. I didn't really have anything to fall back on and going back to my hobbies, education or career felt meaningless. The only pursuit it feels like I have is being sure I have OCD and I feel like I'm almost in some paradox. Because this pursuit and reassurance seeking does feel like OCD to me, but if it is I probably do need help for it, so I feel quite helpless when I don't get it. Has anyone been in a similar situation or have any advice for this? 

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That sounds like a really unhelpful experience of seeing the specialist. :(

Did they offer an alternative diagnosis, something you could look towards treatment for, or do you have an existing diagnosis that they attribute your OCD symptoms to?

I haven't had an experience like that, however, I can say that health professionals seemed very reluctant to give me an OCD diagnosis, instead putting it on paper as 'anxiety/depression with obsessive characteristics'. GPs have since discussed my symptoms and treatment with me in terms of OCD, though,  made a point of prescribing medication 'because it's used to treat obsessive characteristics' and even called it OCD. That's not to say you definitely, definitely have OCD, though. I'm not a medical professional and couldn't possibly say that you did or didn't have OCD because I've never met you. 

If they disagree that you have OCD, or firmly conclude that you don't, the important thing, I would have thought, is that you do get some support and treatment for whatever they do want to diagnose you with. If they can't come to a firm conclusion about a single diagnosis, perhaps they can at the very least look at more generic treatment or therapeutic activity to help you?

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3 hours ago, AmandaG said:

That sounds like a really unhelpful experience of seeing the specialist. :(

Did they offer an alternative diagnosis, something you could look towards treatment for, or do you have an existing diagnosis that they attribute your OCD symptoms to?

I haven't had an experience like that, however, I can say that health professionals seemed very reluctant to give me an OCD diagnosis, instead putting it on paper as 'anxiety/depression with obsessive characteristics'. GPs have since discussed my symptoms and treatment with me in terms of OCD, though,  made a point of prescribing medication 'because it's used to treat obsessive characteristics' and even called it OCD. That's not to say you definitely, definitely have OCD, though. I'm not a medical professional and couldn't possibly say that you did or didn't have OCD because I've never met you. 

If they disagree that you have OCD, or firmly conclude that you don't, the important thing, I would have thought, is that you do get some support and treatment for whatever they do want to diagnose you with. If they can't come to a firm conclusion about a single diagnosis, perhaps they can at the very least look at more generic treatment or therapeutic activity to help you?

I guess there was some mind of misunderstanding. I was sent a letter that I was going to start treatment, but it didn't say anything how the treatment would be like. I guess I was rather naive to not think there would be some sort of evaluation. I thought I had already started the treatment when I was there. And I met three people and felt very intimidated and didn't really say anything regarding my symptoms and then two of them went out of the room and I could finally talk to the third person. And then the two came back and had concluded I didn't have OCD. They also said they only focused on OCD so I they couldn't give me an alternative diagnosis. 

 

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It feels though like the past means more than the present at the moment. That if I could get it verified 100 % that I did have OCD, or alternatively what else that made life what it was I'd be able to move on in some way, but the latter would still be awful to me as most of my life would still feel like a waste of time. 

I just wonder what would happen if I got that confirmation, would I be able to move on? If I did in fact get it confirmed that I did have OCD, would I stop thinking about that and move on to another theme? Would I just doubt that it was true? 

 

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I suppose that depends if the diagnosis or non-diagnosis has actually become a focus of OCD-type thinking for you. From what you've written, it sounds like you're considering that possibility. What could be positive is looking at what specifically is disrupting your life or causing distress, and focusing on what can be done to address that short term, with or without a diagnosis or specialist treatment. A diagnosis itself isn't an answer, it's potentially a path to answers and a path to treatment. Or it's possible to try some therapeutic activities, like relaxation exercises or yoga, or lifestyle changes like exercise, spending more time on hobbies, and healthy eating, that can be of benefit to anyone and don't need to be specific to any diagnosis.

I personally consider it very frustrating and quite unhelpful that specialist services can effectively 'reject' a patient for treatment on the grounds that they've pretty much formed an opinion that a different diagnosis would be more appropriate, but don't (or can't) make suggestions about other assessments that they feel might be more appriopriate. I've heard of this happening to someone who reported gender dysphoria and people who have reported potential autism - they didn't fit the specialists' criteria, so they were left without any diagnosis or support when they clearly needed some kind of support. If you feel you need a new assessment, looking at more potential diagnoses, because you'd like either treatment or guidance on appropriate self-help, or looking again at the possibility of OCD, it might be best to talk to your GP again and explain what's happened. (GPs often either can't or won't diagnose mental health conditions, but they could refer you to a general mental health specialist who could look into other possibilities, or look again at potential OCD. 

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55 minutes ago, AmandaG said:

I suppose that depends if the diagnosis or non-diagnosis has actually become a focus of OCD-type thinking for you. From what you've written, it sounds like you're considering that possibility. What could be positive is looking at what specifically is disrupting your life or causing distress, and focusing on what can be done to address that short term, with or without a diagnosis or specialist treatment. A diagnosis itself isn't an answer, it's potentially a path to answers and a path to treatment. Or it's possible to try some therapeutic activities, like relaxation exercises or yoga, or lifestyle changes like exercise, spending more time on hobbies, and healthy eating, that can be of benefit to anyone and don't need to be specific to any diagnosis.

I personally consider it very frustrating and quite unhelpful that specialist services can effectively 'reject' a patient for treatment on the grounds that they've pretty much formed an opinion that a different diagnosis would be more appropriate, but don't (or can't) make suggestions about other assessments that they feel might be more appriopriate. I've heard of this happening to someone who reported gender dysphoria and people who have reported potential autism - they didn't fit the specialists' criteria, so they were left without any diagnosis or support when they clearly needed some kind of support. If you feel you need a new assessment, looking at more potential diagnoses, because you'd like either treatment or guidance on appropriate self-help, or looking again at the possibility of OCD, it might be best to talk to your GP again and explain what's happened. (GPs often either can't or won't diagnose mental health conditions, but they could refer you to a general mental health specialist who could look into other possibilities, or look again at potential OCD. 

I feel like it has. I think for years I treated it like it's OCD and tried to live with the uncertainty of it, but that also means not getting treatment for it.  I guess that makes me feel hopeless. 

 

I'm, when unemployed, realize that it's these thoughts and wanting to be sure I've had/have OCD that is causing me distress for the most part. It also ruins my ability to concentrate and stay calm. One thing that I think is important is: My intrusive thoughts started at 15 or 16 and from that on my compulsions and rituals would take up most of my time and I would give up making new friends and I would basically give up any kind of normal life. Ever starting a family or having any type of career felt out of the question for me. It would take a while until I went to see someone for this. I was diagnosed with OCD at 23 and something crazy and almost overwhelming happened to me. Knowing I had a disorder (and that I was not my thoughts) made me feel like there was hope and that I could get better. I suddenly started getting hopes for the future and started thinking of having jobs and what not. It was like I had lost seven years of my life and I was now ready to start my life again. I had ten free therapy sessions and after that I didn't try to get into ERP or something like that (which I probably should've). I decided to stop doing my compulsions and rituals on my own. I think I was quite focused on getting better and getting my life back on track. So when I at 25 started relapsing and getting stuck on new themes I didn't really know what to do, because I felt like I was doing so well, but I always had the hopes that I things could get better and I had to continue with my education and fight my OCD at the same time. My intrusive thoughts at the time were very different, they were more existential and less harm or magical and I felt like they almost made sense since I had lost so many years of my life it was hard to know I even was anymore. My dreams when I was first diagnosed had been so euphoric and I was worrying I was going down the wrong path just because of dreams I had when I had lots of hope and didn't actually evaluate my choices. Maybe that was one of the reasons I felt like giving up everything in my life and just focus on my OCD treatment. I guess I'm at an age where most people my age start to form families and get secure jobs and I feel like there's still such a gap in my life that I can't deal with those things, so there aren't many things to focus on to get my mind off the OCD diagnosis thing. I guess I'm just rambling now. I always felt though that my recovery and making plans for my life were intertwined, so it feels like I can't have one without the other. 

thanks for the your suggestions. I've always wanted to try yoga, but I never really looked into it. 

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I hope I'm not posting too much in this thread.

I had some sort of a breakthrough yesterday, but it might be the opposite.

I've been thinking of trying to get my files  or epicrisis from my first therapist who diagnosed me with ocd and get my current therapist to look at them. I just hope he won't be mad at me for bringing it up again. I often feel like I'm beating a dead horse. The last few years I feel like I've tricked my mind into not doing things I want to do, and I want to find a way to trick it back, but I feel like that might be dangerous in some way. I feel like if my therapist sees from my past that I did have ocd I will either still have it or be "cured" (if that's even possible). Maybe I can trick myself into thinking I'm doing better and continue doing what I used to do before 2018. Maybe if I'll trick myself that them saying I didn't have ocd actually helped me in some way I can get better.

Writing this I realize it sounds a bit too far, but yesterday I felt like it was idea and I got some hope that my life could come back. And i felt good for a while. 

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  • 1 month later...
On 31/07/2020 at 20:05, Labbetuss said:

I hope I'm not posting too much in this thread.

I had some sort of a breakthrough yesterday, but it might be the opposite.

I've been thinking of trying to get my files  or epicrisis from my first therapist who diagnosed me with ocd and get my current therapist to look at them. I just hope he won't be mad at me for bringing it up again. I often feel like I'm beating a dead horse. The last few years I feel like I've tricked my mind into not doing things I want to do, and I want to find a way to trick it back, but I feel like that might be dangerous in some way. I feel like if my therapist sees from my past that I did have ocd I will either still have it or be "cured" (if that's even possible). Maybe I can trick myself into thinking I'm doing better and continue doing what I used to do before 2018. Maybe if I'll trick myself that them saying I didn't have ocd actually helped me in some way I can get better.

Writing this I realize it sounds a bit too far, but yesterday I felt like it was idea and I got some hope that my life could come back. And i felt good for a while. 

This didn't really work out well. I pretty much knew it wouldn't. 

 

It seems my therapist thinks I have Asperger's, and I'm not really sure if he means I have it co-morbid with OCD or if he thinks all my symptoms are Asperberger's. Then I guess I need to know the difference and it's gonna be hard to accept that a diagnosis I had for so long was the wrong one. I guess what I feel like is that I have some sort of amnesia (not actual amnesia), but I get the feeling that if I don't have OCD all my memories are wrong and it wasn't actually me having them or something like that. When I read about Asperger's I don't actually recognise that in me though. 

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