To think people with eupd aren’t taken seriously when struggling

[User30372]

A friend of mine has repeatedly told professionals that she didn’t feel safe and was going to do something. She’s now seriously unwell in hospital and I just feel if people listened to her she wouldn’t be in that position. I’m sure she will be sent back into the community despite this. I know inpatient care isn’t the answer to everything but surely for someone at such high risk it should be considered not dismissed due to a diagnoses.

Well I do have some traits as I explained.

@LilyJade

I'm so glad to hear that your medication is helping you, that's such a huge step.

I have bipolar and epilepsy (epilepsy from a car crash a couple of years ago as an adult) and the world can be pretty frightening at times but luckily my epilepsy meds also treat bipolar - they've changed my life.

I have had psychotic breaks before but none for a year or so since my meds have settled. It's trial by error with medication, but my god its worth it to find the right one.

You sound lovely and as a PP said super insightful

Lily I could have written your post and I have an EUPD and PTSD diagnosis. I always wonder about schizo affective disorder though due to visual and auditory hallucinations and severe paranoia.
I don’t get much help from MH services so haven’t had the opportunity to question anyone.
I too have good insight into my condition although I do have a partner and children.

Luckily I do have insight into most things probably due to the meds.

@itsalmostspringagain - interesting that you can't answer any of the points that people disagree with you on or answer any of the questions? I suppose you think you know more than the NHS and NICE?

And what do you want people to do - phone up their relatives and ask them to post on MN? 😂 Is that really the only way you can understand how EUPD is diagnosed and therefore the different symptoms different people will have?

What an educated, humble and balanced post. With that much insight I'd be very surprised if you had EUPC

That's not true either. Almost all my notes from therapists ever since I was 17 and they started suspecting EUPD, have said I have insight into my issues, that I can think rationally but get caught up in the emotions. Insight doesn't stop you having EUPD.

I do think you are being deliberately goady, be implying that someone who comes across as balanced and educated can't possibly have EUPD, and by making the comments about "what a joy they are to live with" and insinuating our families all think we ruined their lives.

My Gran would be happy to talk you about my disorder, but she doesn't use Mumsnet. You know it's not just EUPD that can "ruin" other's lives either, my gran was emotionally destroyed during my anorexia and depression, but they don't get the same coldness directed to them.

@YasssKween unfortunately my epilepsy medication isn't very effective at present.
I used to take Epilim which stabilised my moods too but it had bad side effects so I had to come off it. Onto keppra.
Now I take Zonisamide as well.

@squirrelnut I think you should try your best to get a second opinion as hallucinations & paranoia are not afaik symptoms of EUPD but of actual psychosis

@itsalmostspringagain - and now your diagnosing if people have EUPD (not EUPC) by the amount of insight they have!! Despite lacking any understanding of how EUPD is diagnosed! 😂😂

Insight or lack of is not part of the diagnosis of EUPD. Many people gain insight due to medication and therapy. It is what helps us change! (Because we can change!)

@LilyJade @squirrelnut - transient psychosis is part of EUPD and can include hallucinations and paranoia.

Part of the reason why there is such a high rate of suicide within the EUPD population is death by misadventure. They will take a load of pills for example and then call for an ambulance thinking that it will come, they'll be taken 'forcibly' or otherwise to hospital and any ill effects can be 'erased'. However they misjudge how much they have taken, or help doesn't arrive as quickly as they thought and then that's when more serious effects including death can occur. Or they can put something around their neck and call for help however they have accidentally pulled that little bit too tight and can't loosen it themselves enough to buy themselves a bit of time until emergency services arrive. Or they'll do something ie overdose etc in an area where people go dog walking, or jump off something thinking that they'll be found and help will be called. But unfortunately no one passes for quite some time and that's when it can go horribly wrong.

The wards are taken up with people who have been in for weeks and when discharge is mentioned, they up the risks ie threaten that if they are discharged then they will kill themselves. It's a never ending cycle.

In patient treatment isn't really the best thing for people with this diagnosis. There is much research to show that it is damaging ie they will take overdoses on the ward because they know that they're surrounded by doctors and nurses who will deal with it over and over. Also it promotes unhealthy coping strategies as in 'I'll behave like this ie cut or bang my head and get lots of medical input and attention from staff'. That is maladaptive and not healthy to them in the long term.

Many people gain insight due to medication and therapy. It is what helps us change! (Because we can change!)

This!

went to CAMHS at 17 and said "look, you say I'm depressed but this label just doesn't fit, I know my symptoms and I think I have EUPD" and they agreed they thought the same but couldn't/wouldn't diagnose me until 18 and in adult services, which then happened. I took an active role in getting the help I needed, moved to be nearer to a service with specialist personality disorder clinics.

Also just to add on, EUPD would.be classed as a mental disorder as opposed to a mental illness.

Jeez I did put paragraphs in my post, no idea why it has reverted to one long paragraph!

Zurina
Apologies and yes I know my posts may be taken as deliberately goady.
I'll admit that was passive aggressive but I'm not goady and also didn't mean to be patronising.
I've had horrendous experiences with people with eupd and I would never ever be in any sort of a relationship with anyone ( intimate or otherwise) the minute I suspected.
I'm a professional but never work out of choice with people with eupd. I don't have to as I'm
Not mental health professional.
I think it will always be people with eupd saying how misunderstood they are and people who have actually lived with them saying how destructive they are.
Anyway that's what I think and know every single person here who has eupd will hate me for it. But it's how I feel

@Mlou32 - yes, this is true and why EUPD can be so dangerous and has the highest rate of complete suicide. People have an incident for whatever reason - not wanting to really die but they do - very sad. In-patient treatment on an acute is often not the best place often as those with EUPD can trigger others with EUPD. However, in-patient treatment on a specialist ward can be very helpful - but obviously due to lack of capacity this is only available to the most severe cases.

@Mlou32 - EUPD is classified as a SMI (Serious mental illness). Disorder/illness tend to be used to mean the same thing.

I don't hate you, I'm a bit upset by what you've said but nothing major, and nothing I haven't before. I don't hate many people, maybe two and for good reasons.

Anyway, here is a link if anyone is interested to a paper that was written with input by my personal therapist (not one of the authors) and others who work at my service. It is about MBT, the type of therapy I do, but does cover a lot of info about EUPD. It is from the early 2000s (so uses BPD) but still an interesting read. You have to dowbload the PDF but it's safe as I have it on my phone, no issues. Hopefully link comes out correctly...

b-ok.org/book/849117/eafeb8

Haven't heard before*

@itsalmostspringagain - I think you are massively projecting - understandably as you have had some bad experience. You really shouldn't be near anyone with EUPD on a professional basis as you have an extremely stigmatised attitude towards the illness and are woefully lacking in knowledge about it. I think you really need to stop thinking you know what people with EUPD are thinking or that you know who has or hasn't got EUPD etc. For example I doubt any of us hate you - we probably have much more going on in our lives to spend energy hating a stranger! Most of us who have done DBT would radically accept the situation.

I do think you were particularly nasty to me by say I'm typical of someone with EUPD (when you know nothing about me), by making out I was lying about my DH (MN etiquette is to take comments at face value) and telling me I was blaming someone for my EUPD (but couldn't answer who?) and that apparently the reason I corrected your misinformation was because you had called me out on my behaviour (but couldn't say what behaviour). You seem to like people being educated if they are 'humble' but not those using their education to point out your lack of it.

@zurina - thanks for that I'll have a read.

Cedar good point about projecting but I don't really think that's what I'm doing. Everything I've said it based on facts that I have experienced.
And yes I think I do stigmatise people with EUPD.
You appear to be obsessed that I work with people with EUPD in a professional capacity, I'll say again I DON'T not would I wish to ( please read my posts properly before attacking)
You can clearly intellectualise but that doesn't mean you are healed or have any more insight into your personality than before your lengthy hospital stay. You clearly have no idea how you will have affected people in your life in the long term

@underthecedartree I'm aware that the two terms are used interchangeably however I would always refer to and class EUPD as a disorder as opposed to an illness despite the two terms generally being used to mean the same thing. It's the connotations of the word 'illness' that I and many service users and professionals do not like. Perhaps it's just semantics however I think language can be important.

@itsalmostspringagain - it was you that brought up that you work with people with EUPD - not me. And I stand by my opinion that someone who thinks they have so much knowledge about EUPD but actually have alsorts of twisted views due to a very negative relationship with someone with EUPD and no factual knowledge should not be working with these people. You originally claimed to work with people with EUPD and none of them had stable relationships - now you've changed that as I called out your ignorance.

It's a shame you can't spend a bit of time to educate yourself rather than looking increasingly foolish. I have lots of insight into my personality - I'm an introvert, for example. However that is nothing to do with my mental illness. My psychiatrist says I have very good insight into my illness. In fact I've been asked to peer support the DBT group due to my insight. What on earth can you point to that I've said that shows lack of insight? Is it just that I've said you are wrong? (As have many others). I've no idea how I will have affected people in the long term? How do you know that? Are you aware how you will have affected people in the long term - like the people you told there was no cure for EUPD?

@Mlou32 - I agree words are important. What is it that you like about disorder? My peers and I tend to prefer 'illness'.

@underthecedartree I don't 'like' disorder, I just prefer it to illness. I think the term disorder describes EUPD more accurately; a person with EUPD isn't 'ill' as such; it is more of a case of their emotional regulation skills and coping mechanisms being disordered or maladaptive if you prefer that term. A disorder can be rectified if the correct input is given. Whereas an illness just seems a more...bleak term.

As I say, it's just semantics probably, however it's what I prefer...along with others to whom I have discussed it with. I am aware though that other people may prefer different terminology.

Why do you like/prefer illness?