Actually Having a Diagnosis

[ocdjonesy]

Ok so, I've just spent three hours this morning/afternoon meeting everyone on the local chronic pain service team and have been asked whether I want to be re referred to mental health service to have a formal diagnosis of OCD made.  I am in two minds about it and also feeling frazzled and a bit defensive and ****** off (as I tend to do after having to deal with any sort of mental health services due to years of accrued resentment towards them etc etc ) and would like some opinions on the benefits of a formal diagnosis being worth it or not.

I mean clearly it should probably be on my medical notes in the hopes that that will matter in the future in terms of stream lining any treatment I need and maybe give me access to things like the community mental health team etc etc but lol, we all know reality doesn't work like that and mental health services are a postcode lottery and often actually counter productive due to this and other factors.  If there isn't even a specialised OCD service in my area is it even worth it?  I don't know and thinking about it is just annoying and depressing me atm.

So, what do other people think?  Has having a formal diagnosis helped or hindered you?  Is it worth the stress and effort of proving that's what's 'wrong' with me when I know very well that's what it is (people without OCD don't have the uncontrollable urge to get cat **** out of a bin five minutes after they put it there to stare at it incase there's something wrong with it or any of the other associated ******** I do on a daily basis etc etc) and when dealing with psychologists etc just makes me miserable and angry?  Is it worth it to try again?

Opinions/personal experiences welcome, thanks in advance etc etc etc. 

Edited April 29, 2022 by ocdjonesy

[Lynz]

For me a formal diagnosis has definitely helped as it's allowed me to have adjustments made in work through occupational health, as it can be classed as a disability so it's a protected characteristic under the Equality Act, and employers therefore have to make reasonable adjustments at work if you're struggling etc.

[ocdjonesy]

That is a good point thank you @Lynz I will put that on my lists of reasons to not burn down the hospital 

Edited April 29, 2022 by ocdjonesy

[Zelda]

@ocdjonesy- did they say what a formal diagnosis means? I have often wondered this in the context of work and RA also. Does it require a medical doctor to diagnose this? 
 

[ocdjonesy]

3 minutes ago, Zelda said:

@ocdjonesy- did they say what a formal diagnosis means? I have often wondered this in the context of work and RA also. Does it require a medical doctor to diagnose this? 
 

Not really?  Tbh this was at the end of three hours of feeing throughly poked at by three separate people who weren't really listening to me so I'd sort of shut down at that point.  Something about it being on my notes, me having access to the community mental health team and it being my decision so she didn't really offer me a professional opinion and I was too tired to ask by that point.  And yes I think it would be a clinical psychologist who would do the diagnosing.

Which in my case I have tried about 3 times now to even meet one of those mythical creatures and they keep managing to refuse me so I'm a little reticent to believe it would actually happen and then even if it a did I'm a bit on the fence about it because I'm just so ****** off at this point I feel like it would be difficult to engage with it properly.  I just seem to feel really resentful about the idea at the moment so it's hard to see past that to any benefits. 

Honestly I just feel like drinking a beer and screaming into my recycling bin for a couple of hours about it 

[Zelda]

37 minutes ago, ocdjonesy said:

Not really?  Tbh this was at the end of three hours of feeing throughly poked at by three separate people who weren't really listening to me so I'd sort of shut down at that point.  

I just seem to feel really resentful about the idea at the moment so it's hard to see past that to any benefits. 

 

I’m sorry it sounds really difficult and like it’s been such a challenge to get the right support. Your frustrations make sense to me!  Am following cos I’d be curious what other’s advice is too. 

Edited April 29, 2022 by Zelda

[ocdjonesy]

14 minutes ago, Zelda said:

I’m sorry it sounds really difficult and like it’s been such a challenge to get the right support. Your frustrations make sense to me!  Am following cos I’d be curious what other’s advice is too. 

Thank you I appreciate the sentiment.  And yeah, it's definitely something I think it's worth talking about in a wider context in terms of expectations vs. reality etc etc.  Obviously it's a personal decision but it's always good to be informed and go into something with an idea of what it's actually going to be like and that's where other people's experiences really count.

[Wren]

It really does seem like a postcode lottery - I was with cmht for a year and saw occupational health, psychologists and a psychiatrist but I haven't got any official diagnoses because the team took the stance that labels were not helpful. I'm still in two minds at what I think about their policy - I kind of agree with it, yet we live in a world that requires (and likes) people to have clear identities, so I feel a bit like I'm in limbo land. Just having the label 'mental health problems' or 'anxiety' was sufficient to get help at work, but I don't know if that's the case with all employers. 

[McW]

24 minutes ago, Zelda said:

I’m sorry it sounds really difficult and like it’s been such a challenge to get the right support. Your frustrations make sense to me!  Am following cos I’d be curious what other’s advice is too. 

This is actually a really interesting question, and one I certainly don't have an answer to, but I'll give my two penn'orth here.   I am a self employed tradesman, and one of my regular customers is a Psychiatrist,  lovely chap. One day whilst I working at his house we started talking and I told him about my OCD (nothing in detail, just that I had it) and I wasn't sure whether or not I had an 'official diagnosis..?'    I asked him point blank.. 'what is an official diagnosis anyway..?'   to which he literally put his hands up and his shoulders shrugged, whilst doing a sort of downward smile and a shake of the head.  I said...  so, is it a 'rubber stamp on your record' or maybe you get given a certificate or something...?     to which he replied,  as far as I'm aware, in the GP's notes there will simply be reference to you 'having visited, been prescribed meds, or maybe having been refered to: mental health team, psychologist etc'  he then said 'with regard to psychiatrists notes and so on, it would usually be noted that your are currently being seen and treated for possible or likely (insert whatever condition it may be here.)'    I think the whole mental health sector is very vague when it comes to things like this, ie: rather than stating in black and white, and written on record that (whoever) definatley has OCD, Schitz, BPD etc... the language used tends to be:  'being treated for' or 'suspected/likely'  and so forth.  Language and wording barriers aside, I believe if you are being, or have been treated for a mental helath condition such as OCD, then generally it is recognised and future support may be easier to access..?

Edited April 29, 2022 by McW

[ocdjonesy]

9 minutes ago, McW said:

Language and wording barriers aside, I believe if you are being, or have been treated for a mental helath condition such as OCD, then generally it is recognised and future support may be easier to access..?

That's the impression I have as well which in my case I can see being useful for a number of reasons like I'm considering pregnancy and everything that comes with at the moment and it might be wiser for me to already be in contact with mental health services incase I need any extra support instead of having to be referred to them as an emergency.  However I also feel like I can take every precaution in the world on my end but that doesn't mean it's going to go right on the other end and at this point I'm entirely skeptical of it even making a difference.  

I'm already at my mental limits trying to get a handle on myself and my physical issues - do I really want to be diverting what energy I have towards forming a therapeutic relationship with someone which is trying and exhausting even in the best case scenario of you somehow magically ending up with an nhs therapist you actually like etc etc.  Especially when what I feel I really need is actual real social interaction and community and not some weird half relationship with a person who tells you nothing about themselves then changes jobs half way through what you're doing.  Not to mention the whole power imbalance present in that scenario which drives me up the actual wall just thinking about it.  Having to turn up over and over again and explain very personal things to people you've never met before while they take notes is just... galling.  As I said to the woman today 'it's not like I get to turn up to your house and do this to you'.  The whole lack of reciprocity deal just triggers my **** you response.  Argh.  As you can tel this just really winds me up.

21 minutes ago, Wren said:

It really does seem like a postcode lottery - I was with cmht for a year and saw occupational health, psychologists and a psychiatrist but I haven't got any official diagnoses because the team took the stance that labels were not helpful. I'm still in two minds at what I think about their policy - I kind of agree with it, yet we live in a world that requires (and likes) people to have clear identities, so I feel a bit like I'm in limbo land. Just having the label 'mental health problems' or 'anxiety' was sufficient to get help at work, but I don't know if that's the case with all employers. 

Exactly - there's no one unified approach to dealing with any of these issues so quite often you can end up spending a lot of time being stared at like a dog who's been shown a card trick by an array of people who are supposed to know what they are doing but who tbh are as clueless as the rest of us most of the time.  Having a diagnosis one place is going to be ****** all use another place so it's like, is there really a point to chasing it outside of how much it's stressing me out to engage with the process?

 

AAAAAAAAAAAAAA BRING ME THE BIN TO SCREAM INTO 

[northpaul]

2 hours ago, ocdjonesy said:

Has having a formal diagnosis helped or hindered you?

In my case, I would say neither helped nor hindered.  My medical records for almost 30 years would show that I have been suffering nervous dibility/depression.  It was only 6 months ago that OCD would have been specifically entered after my GP received the report from CBT therapist.  I believe that my GP will be continuing to enter depression on my record with OCD being a major symptom.

[Wren]

48 minutes ago, ocdjonesy said:

 Having to turn up over and over again and explain very personal things to people you've never met before while they take notes is just... galling.  As I said to the woman today 'it's not like I get to turn up to your house and do this to you'.  The whole lack of reciprocity deal just triggers my **** you response.  Argh.  As you can tel this just really winds me up.

Oof, I feel this in my bones....

 

Can you find out something about how your local trust operates? I don't really understand what they mean about giving you a diagnosis without it being in the context of a complete treatment plan.

[ocdjonesy]

3 minutes ago, Wren said:

Can you find out something about how your local trust operates? I don't really understand what they mean about giving you a diagnosis without it being in the context of a complete treatment plan.

This is a good point.  I'm not sure who I'd ask this but I'd guess how it operates is 'it doesn't' since I'm in the highlands and I'm pretty sure they're got maybe two psychologists to rub together to keep warm in winter*

*disclaimer I am aware this is more than likely an unfair statement that doesn't do credit to the people working for the local nhs trust but I'm all hopped up frustration and resentment today 

[Wren]

I've now got weird mental images of psychologists trying to light fires Ray Mears style. Maybe today is not best day to be making decisions. It's over five years since I left cmht, and I'm still not decided what I think about the experience or how I view diagnosis, it's not easy.

[ocdjonesy]

You're absolutely right I'm going to take my time thinking about it (though at the moment I think it's pretty obvious I'm in the no camp ) and just get on with life as normal.  Thanks for your time and input it's honestly just really nice to blow off steam with people who know what you're talking about so I'm glad I started the thread to do that.  HEALTHY COPING MECHANISMS and all that (she said through gritted teeth).