Diagnosis process

[Turtle]

I'm so confused about diagnoses at the moment. I don't know how helpful I think diagnoses are anyway - when the professionals starting assessing me for/talking about BPD it was both helpful and not. Helpful because it made me feel marginally less crazy for some of my behaviours, but not because what does any of this matter?

But I'm confused about whether I am diagnosed. I'm always dipping in and out of systems because of moving around anyway. Then they started talking about formally diagnosing in March and then COVID hit, so any thoughts about long-term help were cancelled.

My new GP called and she asked about whether I'd been formally diagnosed - I said that I wasn't but something had been thrown around, at which point she asked if it was a personality disorder, so I said yes...  So there's clearly something on my record, but I don't know what. I know NICE guidelines say that for BPD you should be assessed for a psych for 6 months? I'd quite like to access my medical records at some point to see what they're saying about me. (I could access through work but could be fired so really holding back on that).

I know the NHS can be quite reluctant to diagnose, so I guess I'm asking - at what point are you diagnosed? And is it even useful/does it matter? It's just bothering me!

[Tucan]

A diagnosis can help you to understand why things are the way they are. Also it can help create a pathway to treatment. So for the case of borderline personality disorder it can help direct you to therapy that is designed to help with some meds. It can be hard to accept a diagnosis especially at the beginning. How do you feel like about it all?

[Turtle]

On the one hand it's so validating, because someone is saying, "Yes, you've really been struggling, even if it's not depression and there are some real highs". Because when I get those huge lows it's terrifying. But then I have a good day and I think everything's fine and I'm attention seeking or overdramatic. Or that I can go it alone and I'm amazing. Or that I've made it all up and I'm awful but no one should help me.

The GP doesn't want to refer to services regardless of diagnosis because the services are so rammed up, unless I'm still struggling in 2 weeks. So right now they're just tossing around a label without offering support.

Plus I've read so much about BPD that basically says anyone with BPD is attention seeking and taking up space in services and manipulative etc etc etc etc.

I don't know if I'm making much sense. I'm just confused by it all and don't know what to think and it all feels pointless if they're not going to offer support.

[Lorien]

The image of BPD is often bad with professionals but often it's because it challenges them and their skills. Ha e you had a look at the actual criteria to think about whether you think it fits?

Any Psychiatry appointment will be followed by a clinic letter sent to your GP. I used to be automatically sent them which I appreciated.When my Psychiatrist and diagnosis changed they stopped doing that. So I called and asked for a copy which was sent out without issue. There is a diagnosis box in a standard format here but other areas may be different. But it should tell you what diagnoses you do have and an outline of the conversation and 'presentation' - what they thought about you. Sometimes they are a tough read but you are entitled to read them, unless they think it will be harmful to you. Even then they should provide an explanation or redacted version.

[Turtle]

I've had a look at the criteria and it does fit. I think I'm just confused about the formal diagnosis part - no one has ever formally diagnosed. I had an assessment for BPD, and then moved. I was discharged under new services. I then ended up in hospital a bunch and then was being assessed to see what help they could offer, and when I was about to have my next appointment to see if they'd offer support Covid hit and all support was cancelled. On one recent hospital discharge letter it said 'probable accentuated EUPD traits', another just said EUPD, my new GP asked if I have a personality disorder. But I'm not formally diagnosed? I guess it doesn't matter, it just means I feel like I can't talk about it. I really hate the trend of self diagnosing?

I could ask my GP for a copy of medical records which I guess should have any clinic letters? Although there will be scarce few clinic letters because treatment hasn't been continuous, it's been all over the place. I've read all the hospital letters I've been sent.

I think the site for my GP surgery said you can request online access and see your medical records there.

Maybe none of this matters, I just feel weird about it all.

[Lorien]

If you want to you could request history via your GP, but if I wanted to know specifically if a diagnosis was in place, I'd call the most recent Psychiatrist's Secretary and request just the most recent clinic letter. There is less chance of refusal, you don't get more information than you need and it won't take forever. Either that or ask your GP directly to check.

I never had an actual assessment for any personality disorder, but had various versions of EUPD or PDNOS recorded before my autism diagnosis when they realised that it was an incorrect diagnosis.despite the fact that I had a good 9 months having weekly appointments with a Psychiatrist at a Therapeutic Community for Personality Disorders.

I don't know if they are supposed to do an assessment as such or if they can use their judgement based on the criteria and a history. My Bipolar diagnosis was done this way - standard appointment discussing historic problems, then made more specific later when they saw patterns. I don't think everything has a full and structured assessment. In fact I'd be willing to bet that more things don't than do. If they have made a decision it will be recorded. But it may well say something like PDNOS, or traits of EUPD, or probable EUPD, depending on what they think. I don't see any problem with telling the GP/people that need to know that is what is written or a simple I don't know. That isn't self diagnosis, it's just passing on their wording.

[Terri]

Late to the party, but...


Diagnoses are weird, I've decided. I've had a few over the years.
 
- Acute and transient psychotic disorder
- Depression
- GAD
- Schiophrenia
- Schioaffective disorder
- PTSD
- EUPD


They've settled on EUPD for the moment. I was once told that it wasn't diagnosed previously becasue I'm a 'lovely person who is not difficult' and professionals were trying to be kind by not labelling me with something that some perceive as a really negative diagnosis. I mean, what? Talk about massive amounts of stigma within the mental health profession towards a diagnosis that is often (though not always) a result of trauma.

I think Lorien is right that it's got a bit of a bad rep with MH professionals because we are not easily treatable and therefore challenge their skills. It is not as simple as popping a pill or having a bit of cbt. It requires intense, long-term therapy and professionals that will both validate you and call you out when your behaviours are unhelpful - in such a way that is genuine and from a place of concern rather than judgement.

I am super fortunate to live in an area that has a specialist service for those who eperience emotional intensity and associated issues. It took MH services 12 years of faffing about, drugging me up and detaining me before I happened to get a cpn who specialised in PDs. She worked with me for a while, figured out what was actually going on and now I'm on the right track. I had a 2 hour PD assessment to get diagnosed. Getting this diagnosis has changed my life for the better, thanks to the area of the country that I live in and the therapy available here. It's a bit of a postcode lottery though and I really feel for those who aren't in a location that offers specialist input. It must be a nightmare.

Things are changing. The stigma is still very real, but it is being challenged and even professionals are learning (albeit slowly.) I really hope you get some decent support soon. You deserve to be heard and to get access to treatment that will make your life feel more like you want to live it. Happy to answer any questions you have if you think that would be helpful.

[Turtle]

Thanks both It all feels a bit redundant at the moment because my new GP is offering no support - but it's interesting hearing different insights about how people are diagnosed. It's all just tiring isn't it?

I ended up asking for my medical records in the end, and I did get them very quickly, but nothing much on them. It gave me my weight (significantly lighter than now - thanks Covid), patchy immunisation history and medication. I haven't actually had a psych appointment since I was 15? 16? I avoided services for ages after being discharged from CAMHS and just muddled through in my early 20s until everything was unmanageable. I think I was going to be asked to see a psych pre-Covid, but that all fell through and with current GP being unhelpful I guess I won't be asked now. So I don't think I'll be able to get any more particular insight into whether they've diagnosed me or not.

Oh Terri! I can't believe that comment about not diagnosing with EUPD because you're not difficult! Although at the same time, I can believe it because some mh professionals are... not the best. The problem is it encourages people to be difficult - or 'manipulative' as people with EUPD/BPD are commonly labelled. It's all so silly. I'm glad stigma seems to be challenged more now. Thank you for all your insights and kind words and I'm so so pleased for you that you're getting the support you deserve now.

I guess different postcodes have different assessment processes and access to treatment - no great surprise but absolutely frustrating. I've moved around a *lot* over the past couple of years which has really muddled up everything - I guess means they can't do anything properly with me. My friend told me I should stay in one place for bit... But it's doubly frustrating because all the moving and chopping and changing is related to mh stuff. I get a big high, start something new, run into issues and get into a pickle. I can't settle on anything and nothing fills the big old hole inside. I really should have stayed in London - they were offering DBT when I was in a better place than I am now. I was intimidated by 18 month waiting list, but I'd have waited 10 months by now.

But I didn't and I'm not being offered support at all now and I'm too tired to fight for it right now - so it just feels redundant. But I do appreciate you both being kind and listening and offering advice - thank you

Sorry - I'm sure I'm very muddly right now! Strange old week.