Author Topic: Diagnosis  (Read 6443 times)

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Offline Lorien

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Diagnosis
« on: June 11, 2019, 01:26:41 AM »
 :sofa1:

Went back to a Psychiatrist after 4years without. They removed an EUPD diagnosis and said they think I'm actually Bipolar. This is a year after an ASD diagnosis.

I'm sick of "labels don't matter" they can stick their "Psychiatry is not an exact science". It does effing matter. Some of this is pretty fundamental to who I am and how I understand myself and the effing world.

No idea what I do now. My mind is a bit screwed by this. I don't know how I start over trying to get my head straight when this is 2 big changes in narrative in 2 years. I've always been alright at work, but last week I had the worst panic attack I've ever had at work. My boss is great but I don't know how to sort myself out.


“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

Offline Rob

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Re: Diagnosis
« Reply #1 on: June 11, 2019, 10:45:34 AM »
Psychiatry can be a very inexact science. In my mind, a lot of different personality disorders can go together in varying amounts - think of it like several overlapping circles, the overlaps containing more than one. That doesn't help you understand things now, but even if your diagnosis was totally correct at one point, it doesn't mean that it'll always be the dominant one.

I understand when they say that labels don't matter, but they aren't taking into account that 'having a label' can be a validation that helps you understand yourself, and as such can be important.

Was there something that triggered that panic attack?
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Offline Lorien

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Re: Diagnosis
« Reply #2 on: June 11, 2019, 03:13:43 PM »
I think its more than validation. The discussion around Autism completely changed my perspective on pretty much everything I do. In doing that, from the first discussion I've not s/hed at all in 3 years. That was after it being a pretty continuous part of my life for 15 years and escalating over that time to a point where things were pretty scary. It seems a lot like the ASD diagnosis now means that they have something appropriate to write, so the "i have to write something" element of the EUPD diagnosis goes and it feels like they pretty much hung that all on the fact that I do s/h. I have never met enough of the criteria anyway and it has never felt like something that has made sense. I think that people here are pretty aware of how sh*tty some professionals can be around PD. But it feels a bit like the ones that weren't were a bit naive to think other people wouldn't be.

I spent a lot of time working out what things worked for me and rewriting everything in my head because what i had been told was wrong. Now it feels like i have to start all over again. The difference this time is that I don't have the information I would need to do that. I knew a lot about ASD previously and I just had to try to work out how to apply that to myself. I don't know a lot about Bipolar disorder and what I do know scares me. My Ex had a Manic Episode with Psychosis a few years ago and the fall out from the things he was doing then essentially trashed his career. I've been working my ass off trying to manage work and Uni together, but it feels a lot like I can get to wherever I want, having worked as hard or not as I feel like, but there will always be the prospect of an episode of depression or mania on the horizon that has the potential to sweep it all away. It is also hard to trust pros. I pretty consistently told them that they were wrong for 10 years and they take the rejection of anything that wont work as "being difficult".

One Psychiatrist recommended I spend 5 days a week for 2 yrs in a Theraputic community...while also saying that I don't fit easily into any of their diagnostic criteria. So in essence, I was being difficult because I refused to spend 2 years of my life being treated that intensively for a condition I don't have. Advice based on assumptions about what I probably would do from people that don't know me, based on that single line explanation also includes: not meeting someone from here again after they were the only person I could contact when I had seriously hurt myself and couldn't make myself call an ambulance. They appeared from the depths of the internet so that I didn't have to have general anaesthetic on my own. But because of the assumption that I would have turbulent relationship with them. I was "ignoring advice" when I met them again...we've been together 5 years and are engaged.     

I think the panic attack started at that point because i was helping someone shower and the room was hot and full of steam, so I had a reason to find it more difficult to breathe. Then I spiralled into complete panic. I think I was ignoring things and then I couldn't ignore them anymore. It was exactly a week after the change in diagnosis. Mostly I think it was a combination of not knowing how to handle the change on top of a very hectic work/uni life.

If a diagnosis was just a word, I'd agree it probably doesn't matter especially because I've not changed. But it isn't just a word, it is a way of describing and entire person, in as few words as possible. I guess I kind of see their "I don't like labels" in the same way as I see it when people claim that they "don't see race". It is a step away from direct prejudice and well meant, but fails to recognise that it exists. That the historical presence of that prejudice informs the opinions people have without them being consciously aware of it and enables the continued poor treatment of people under that banner. It is pretty amazing the extent that people's attitudes change based on a diagnosis. Before when I didn't make eye contact with a professional that I didn't know, they would be annoyed by it and at the very least chase it. People took it personally and made it an issue. Now, I still don't look at people, but no one minds, because that is expected in ASD and they know its not personal.
“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

Offline Vermilion

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Re: Diagnosis
« Reply #3 on: June 11, 2019, 04:10:37 PM »
It was often assumed that I had EUPD purely because I'm female and self harm and also have 'emotional instability' which applies to most psychiatric disorders. I was never diagnosed but I felt like it was the whole 'well, we have to write something' kind of crap. I was diagnosed with ASD last year and after a lot of my own research (because professionals didn't seem to have a clue) I feel that the diagnosis does indeed fit. I was also seen as being 'difficult' or 'not engaging' due to a lack of eye contact/inability to attend groups etc but I've found that a diagnosis of ASD has meant that professionals have to be more accepting of these things. I think that it's perfectly okay to have a say in your diagnosis and to go with the label that you feel best fits you. That's what I've done. Of course I don't mean self diagnosing but discussing them with professionals to reach the correct diagnosis is perfectly reasonable. It can be very difficult though because many disorders overlap with symptoms.
Regarding the bipolar dx, do you feel it actually fits your symptoms? Also bare in mind that there are different types of bipolar and not all of them are severe and some sufferers have one major episode in their entire lives.
It does make me wonder how many people have an EUPD dx and are actually autistic. I think that professionals are too quick to slap a label on girls as having EUPD because it's a vague label with many symptoms that can be ticked off easily in many people and then 'it's just part of her personality which can't be treated' which is appalling because EUPD is a very real disorder with very real struggles.
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Offline Lorien

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Re: Diagnosis
« Reply #4 on: June 14, 2019, 12:46:58 AM »
I would think that the number of people who are being treated for EUPD, when they are actually Autistic is very high. There has been some research on the fact that some areas overlap but that focused on the idea that lots of people have both.

Its now common practice where I live to screen for ASD if someone has an ADHD dx because they are very frequently co-morbid. But that is CAMHS. I don't know why the same is not done for PD...especially when they aren't sure... Particularly because CAMHS isn't actually supposed to diagnose PD. Occasionally I do want to be able to go back in time and give the CAMHS Psychiatrist all the info I have now. Not just for my benefit either. There was an inquest here a few years ago when someone from the same school was seen by the same Psychiatrist and died, she commented that he may well be autistic but, high functioning - like that makes it irrelevant.

I do think that Bipolar fits better and unlike ASD it has been discussed before. I just feel a bit like every time I build up a good and useful understanding of myself, something comes and kicks it down. It makes it difficult to want to start again with that.

I know that there is a huge range in the ways any condition affects an individual. It was just a bit scary. Life is pretty much on track these days. The idea that I may blow it to bits in future is terrifying. But with some time to reflect a bit, I know I'm not different and I guess forewarned is forearmed. So I can at least work out how to reduce the likely hood of messing it all up.
“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

Offline Vermilion

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Re: Diagnosis
« Reply #5 on: June 14, 2019, 06:33:58 PM »
Things like autism and ADHD etc are developmental issues where as PDs are psychological so they're different specialties, albeit co morbid. The lack of support for adults with high functioning autism and mental health issues is appalling, the two departments need to work together more.

I find MH support feels a bit like a competition- whoever can hurt themselves the most severely wins the treatment. They probably have to prioritise because of the severe lack of funding but it comes across as dismissive.

I always say that you can never prepare enough, I'd try working on a crisis plan with your psych just in case things get bad but the trouble is that MH is so unpredictable. Discussing this with your partner would be a good idea too because he/she would probably notice any odd behaviour etc that could be signs of a crisis and come up with a plan that you're both happy with.
Some people go through many dxs until they find one that fits and maybe you've found the correct one.
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Offline Lorien

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Re: Diagnosis
« Reply #6 on: September 27, 2019, 09:15:46 PM »
I feel you on the feeling like a competition thing. I think that was probably one really unhelpful thing that was almost always true. The more significant the thing I did the more everyone focused on the risk, but often that was in the way of focusing on what was happening to make that risk higher. Also, the less likely people were to hear what I was saying about what I thought would help or not help. I guess there are times that I feel really guilty about the amount that I much I must have cost the NHS over the years. But that is also mixed up with a lot of resentment of the fact that if they had got it right in the first instance I probably wouldn't have.

Since I wrote the original thread I am a lot less angry (most of the time) and between times there was a period of time where sleeping went out the window and I was really agitated. They increased the medication they had already been prescribing and gave me temazepam and diazepam to manage the agitation. So I have now spoken to the new Consultant, although making myself understood was difficult at the time so mostly they spoke to my partner.  I don't actually know what they made of it at the time and I will have to wait until I see them at the end of October. My partner is coming too so she will help ask if I can't. I'm already quite worried about the appointment even though its just less than a month away.
“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”