Fed Up With BPD Stigma - Anyone Else?

[Butterflywings168]

Just that really. I have had it with this
The attitude of mental health services that people unlucky enough to be labelled with this are a waste of space, attention-seeking, liars, fakers, manipulative, don't take responsibility, not really mentally ill and in control and just choosing to behave badly, not as deserving of help as people with other diagnoses or of help at all...(oh and of course actual other diagnoses that person has get overlooked.)
I have lost count of the times I have said I experience x and been told oh no you don't dear, or that's normal (when no, it isn't). Told aw dear sorry you want to die but go and bother the Samaritans instead of us, or go and have a bath and a cup of tea, you're not really ill.
I have lies in my notes - because I have the BPD label I must be druggie alcoholic and promiscuous, um, I am actually fairly mousy, have had a puff of weed precisely twice as a student, went through a phase of using alcohol to deal with depression and anxiety I wasn't getting help with so now barely drink, didn't even sleep with anyone until university and have actually always been sensible and have very little experience because you know, being too socially anxious and self-hating to go out doesn't lend itself to meeting people, but my saying I wasn't interested in a serious relationship at that time to cover up my shame and embarrassment at my LACK of experience has been taken as the opposite.
They really just view everything you say and do through the lens of that you are evil BPD scum.

I have virtually given up on the prospect of getting any help. I will just have to try and drag myself through this alone.

Yes, I have had private psychotherapy. After the NHS fobbed me off with counselling and CBT, admitted that wasn't enough, put me on a waiting list, 18 months later I finally got an appointment...I asked to change it because it was early morning and was then told I couldn't (because I must be lazy BPD scum right, not that I was on heavy medication and had physical health issues that made it difficult to get up) and then got a letter discharging me basically telling me I was a piece of scum who didn't want therapy to work and was impulsive (when I have always been trying to fight self-harm and suicide attempts, and planned them for a long time but hey, don't let the reality get in the way of what services decide to see).
Do not talk about DBT. It is victim-blaming shit. I have social anxiety, I don't want to talk about personal crap in a room full of strangers! And it is no more than the usual 'have a cup of tea' crap anyway ie 'you lazy idiot, why won't you help yourself'. I once went for an assessment, tried to explain to woman about above-mentioned issue with getting up, told to get an alarm clock. Oh, wow, I bow down in gratitude to that thought! It's not like I worked full-time for several years before becoming mentally and physically ill and strangely enough managed to get in on time! No, I have the BPD label so must be lazy scum who can't get off my arse! Of course I didn't want to help myself so much I paid money I couldn't really afford for private therapy. But mention of my NHS diagnosis sounded the death knell to that, too. No-one wants to work with people with the BPD label.

Not to mention the general public perception that we are evil bunny boilers.

Helpful when these are people who already have a very negative image of themselves.

So I thought I would start a venting/ mutual support thread...anyone?

[NanaNina]

So sorry butterfly that you've had all these awful experiences. I think BPD is just a "catch all" diagnosis when nothing else fits and even though they're changing it to "emotionally unstable/intense personality disorder" it still means the same, and I agree there is no real treatment for this mental illness.

I just think that people who have never experienced MH problems (serious ones) have absolutely no idea of the torment that we go through and it's not really possible to explain it - it defies description. I have a diagnosis of depression (severe at times) and on meds, and it comes and goes but on bad days I just want to hide from the world.

Sadly there is still so much misunderstanding and stigma around MN issues and I'm not sure this is ever going to change. And I know so well the "have a nice hot bath" or "the healing cup of tea" or the "walk of wonder" - all crap and no help at all, but I don't think there IS a way anyone can help when we are at our lowest times. People talk about exercise and healthy diets and so on, but when you don't have the motivation to crawl from under he duvet..........well. I too have had therapy and it was no use to me at all - and if anyone else mentions Mindfulness to me I might just hit them!

Sorry I know this isn't much help..........maybe others with the same diagnosis as yours will be along who can be more support.

[NanaNina]

There's a fairly recent thread "Just been diagnosed with BPD" that you might like to look at.

[amyroseeeee]

don't have much to say other than thank God someone is in the same boat as me.. ive recently been diagnosed emotionally unstable bpd after 12 years without any diagnosis and the stigma and treatment of people who suffer with it is awful. plus i totally agree that the 'answers' given are, make a cup of tea, go for a walk etc etc it's all get up and do it yourself, pull your socks up and get get on with it which is completely ridiculous when you are going through an actual crisis and need urgent help! it is a very very complex condition and if I'm very honest i think it's a go to diagnosis if they don't know what is wrong

[LadyDeadpool]

I recently saw a woman with BPD on Reddit be told to give up custody of her children as she would ruin their lives.

I've recently been diagnosed with BPD but 10 minutes on the internet told me its the reason my parents never wanted me, that my kids will never love me and I'm a burden on my husband. I'm angry and I'm hurt but I'm hoping that my newest refferal to a personality disorder support group is going to help me find me again. It just feels like a BPD diagnosis makes me scum not worth bothering with. The community adult MH team certainly signed me off quick enough after droppjng that diagnosis even saying in their report that I didnt want help for my OCD. It's hardly suprising that so many with BPD commit suicide.

[dontrunwithscissors]

I agree there's a whole load of stigma against BPD. I strongly believe that there's a big dose of gender stereotyping going on--perhaps a replacement for the old 'hysteria' diagnosis. It's been shown that women are far more likely to be diagnosed with BPD. That people are suffering is clear, but to say that their 'personality' is disordered is the ultimate insult.

Although the magic cures of baths, bananas, and walks are dealt out in healthy doses to many people. It's as much about a lack of resources, I think.

[kittymax]

Hi everyone. I think I have "possible BPD" in my medical notes and I certainly fit the diagnostic criteria and I've had the same problems as butterfly for many years. My first OD was when I was 13, then again at 19. I had my first son at 21 and from then on had to be careful as I didn't want to have him taken off me. My second son came along at age 29 and I was still a mess. My GP tried to get me admitted for a few days respite when I went to him in a state. He got me a same day emergency appt with our nearest pysch hospital. After speaking to the psych for an hour (and expecting to be admitted) he said that I was just having a bad day and sent me home :( I'm 42 now, had 2 more ODs, lots of cutting and using alcohol to medicate myself and actually atm worse than I've ever been. I've asked to be sectioned 3 times and been refused. My current GP is excellent and doing her best to get me better. MH services are shite where I live. I don't have a CPN, access to a crisis team or a care plan :( I do have an appt with a psych 1st June if my partner can keep me safe till then. Am I eligible to join the club? Ps- so sorry you guys have had to put up with this shit too, big hugs to all

[creamhearts]

I have a BPD diagnosis.

I have done DBT, it is not about sharing your personal life in group.

I do think BPD is a diagnosis given to women who present with complex needs and are not easy to manage. Which makes me sad.

I personally have not found it a diagnosis of exclusion. I am under the CMHT and I am currently sectioned (and have been previously). Generally in A&E I have been treated kindly - sometimes the medics find my self harm upsetting or surprising.

[gamerchick]

The young lady I'm a carer for has EUPD and it's really hard watching and being a safety net with the multiple overdoses, extreme self harming and the other stuff she does.

However she has a massive team around her who specialise in this particular PD so we've kept her alive till now.

This type of personality disorder has a high accidental death rate but sufferers do grow out of it in their 30s .... Something about another part of the brain kicking in?

I don't understand why you've been cut loose though... PDs need careful handling despite the view of others who think that the sufferer is in control and attention seeking. I have to be honest in teaching the end of the rope myself on occasion, despite knowing she can't help it.

[dontrunwithscissors]

A big problem is that BPD/EUPD is also used as a 'dumping ground' for people who the MH system can't figure out how to help. It's particularly common to see peope move between a BPD and bipolar diagnosis. I think that really complicates the situation.

[kittymax]

According to t'internet people with BPD are supposed to get better as they get older. I'm not getting better so I think I might be bipolar 2 but as I haven't tried to jump of a building or been arrested I guess I won't get that diagnosis just yet. Dreading my psych appt. Scared she's just gonna dismiss everything I say and then write a bullshit report to my GP and then discharge me like last time. I already have anxiety and depression, surely they have to do something? :(

[Butterflywings168]

Yay comments thanks all. I am glad it's not just me, but also sad.
A few people said this is a dustbin diagnosis! It so is! Lucy Johnstone (excellent clinical psychologist) said something like it means 'I don't understand you, don't like you and don't know how to help you'. Funny how
Thanks Nana. I agree, it's a dustbin diagnosis. And I know so well the "have a nice hot bath" or "the healing cup of tea" or the "walk of wonder" I like your snarky way of putting it
Oh I will look at that thread.
amy and dontrun that's very true that the cup of tea, go for a walk etc is done to everyone with all kinds of MH issues not just BPD.
Lady I recently saw a woman with BPD on Reddit be told to give up custody of her children as she would ruin their lives. what scum to post things like that. I feel sorry for their kids if they have them. And yes, exactly, frankly I avoid looking up BPD on the Internet now because of this kind of thing, crap that we're all evil people. I'd also have thought surely parental abuse and neglect ('my parents never wanted me') is the cause of people's MH issues!
kitty of course you can join. And hope your appointment goes well.
In fact >makes club badges> and >hugs< and to everyone with this awful diagnostic label.
creamhearts re: DBT, is it not? Surely there must be some discussion of sensitive issues? Anyway I find it difficult to work in a group in any case. Sorry you're having a bad time atm. I have been sectioned. I didn't mean all HCPs judge and treat people with these issues badly, in fact I very recently had a trip to A&E and was treated fine, but that hasn't always been the case...
dontrun yy I know so many people who have been moved between BPD and bipolar. Guess when they've been treated better

[Butterflywings168]

Oh and dontrun entirely agree it's a gender issue.

[Butterflywings168]

And the perception that mothers with this diagnosis must be terrible and abusive makes me so sad, and worried for my own future. I have heard so many stories about SS involvement where they have had this prejudiced attitude I know that happens to mothers with other MH issues too.
What pisses me off is that at least those women are getting treatment. My own toxic mother had bad PND and other issues, and her behaviour damaged me because she didn't get treatment. I am trying very hard to work on myself, so I won't fuck up any kids I have (too much)...I might never have any if I never get to that point. I would never intentionally harm anyone and I'm sure no-one else here would. Actually I can be very caring and empathic (the good side of 'emotional sensitivity' or whatever you want to call it). Yet we're demonised.

[mamadoc]

Can I ask genuinely from the other side what would be helpful?

(I am a psychiatrist but an older people's one so I don't see people with BPD these days. I have no current axe to grind just genuinely interested)

There is no medication that is shown to be consistently helpful. DBT and CAT are psychotherapies with an evidence base in BPD. I understand these are the best long term treatments.
Admission to hospital is fine for a short term crisis but it's only really a respite if you have no definitive treatment to offer.
Support from the CMHT is running the risk of patronising 'go for a walk, make a cup of tea' type advice because really what else can they do. I mean they can listen, get help with practical stuff eg finances, housing but they don't have a magic wand either.

[gamerchick]

I ask the same question myself frequently... What is it you want, what do you want to happen? I've never gotten an answer and gave up asking after a certain point of hospital visits.

[mamadoc]

I don't at all deny that misdiagnosis is a problem.
I have fought against it being applied to people whose behaviour staff don't like but who in fact clearly are psychotic/ manic or depressed.
But for some people it is the correct diagnosis and I have known people find it helpful to be given the diagnosis because it accords with their experience. Problem is that there is no short term fix.

[NanaNina]

I think mamadoc that most people already know that there's no cure for this mental illness and they also know there are no "magic wands" and forgive me but that sounds a tad patronising. I think people want to rant about the stigma of mental illness (maybe on this thread particularly BPD) but it is "alive and well" in related to all MH issues as I'm sure you must be aware.

I think it's just a case of posting to know that you're not the only one suffering in this way, as somehow knowing that you aren't alone with MH issues does somehow help in some small way.

It's interesting that you don't see BPD as you are an older person's psychiatrist - maybe this will give hope to sufferers that it does "burn itself out" before 65.....I don't know - is this the case do you think?

gamerchick I don't like the sound of your post but may have misjudged you. I don't know what connection you have with MH issues - but I can answer your questions - "what do you want to happen" - for this torment to end and to be able to have a reasonably fulfilling life, not possible I know. It's just you don't sound like someone who has first hand experience of MH issues.......it honestly can't be understood the havoc MI wreaks upon us until you have first hand experience.

[mamadoc]

Sorry if it came across badly. I was aware that it might and in fact I usually hide MH threads because I know that they are for people to support one another.

This one I felt drawn to because I just wanted to say that whilst there are a lot of bad attitudes to PD and that is not acceptable there is also a lot of shared bewilderment and frustration because of not knowing how to help.

I once went to a helpful talk from Geraldine Linehan who writes a lot on BPD and she encouraged us to realise that anyone in a health profession probably has a 'need' to help others. There is something in it for your own self esteem. Therefore when you can't help it feels bad to you and a failure and you might blame the other person if you are not aware enough of yourself.

It is said that PD 'burns out' later in life and it is certainly true that I rarely, if ever, see people over 65 with this diagnosis. I think that people have more agency than that and should get more credit. I think people learn emotional regulation and coping strategies through life experiences. DBT is a more formalised way of doing that I think.

[mamadoc]

Oops Marsha Linehan. That's who I meant.

OP I am genuinely sorry for derailing your thread. I will go back to hiding them now

[gamerchick]

nana read my first post on this thread. After 3 overdoses and one extreme self harm episode I had to deal with as a carer last week alone in going to ask that question. I think I'm qualified in the experience you think I need because I'm tearing my hair out!

[NanaNina]

Oh mamadoc please don't go into hiding and you haven't de-railed the thread at all. It's not often we get to hear from a psychiatrist, although there is another one on here sometimes who has Bipolar. I absolutely understand what you mean about the "helping professions" and if you are not very self aware you could end up in blaming mode in relation to the person you are trying to help. I think I was being hyper critical.

I have a 30 year career in Children's Services (social worker & middle manager) retired in 2009 and whilst I never blamed service users, I did experience that feeling of "oh I've heard all this before.........so many times" and I think to be honest that's just part of the human condition. And I'm sure it's true for many in the "caring profession" or any other employment for that matter!

I have been an IP on 2 occasions -once in 1995 and once in 2010, both times 3 months duration with severe depression, not sectioned. I made a complete recovery the first time, but not so the second time. I was pretty appalled though that nothing much had changed in terms of IP care in the 15 years between my admissions. Staff nurses mostly in the office, or dishing out meds etc and NAs who did sit amongst the patients in 2010 (whereas they didn't in 1995) but it was worse really as they just talked to each other "around us" - the only time they talked with the patients was when we were well enough for social "chit chat" about their kids, weddings etc etc. At least 2 of the NAs were emotionally abusive and I reported them to the CQC after discharge but I know they are both still working on the ward (I was 66 in 2010 so on Older People's Ward) The conslt psych was a very intimidating man and had the social skills of a slug! All the staff were intimidated by him and reviews were Q and A session between him and patient, where he barked Qs and I did my best to answer. The rest of the review team could have been cardboard cut outs as they remained silent. I think he left under some sort of cloud!

I have a lovely CPN and the new conslt psych appointed to the Trust is lovely, very gentle and caring.

Gamerchick yes I've read your post now - sorry I didn't realise you were a carer but I still don't understand if you are wondering what the MI person you are caring for "wants to happen" - you said in your first post you were "reaching the end of your rope" (not a good analogy) so maybe caring is not the thing for you. I don't understand your comment about "being qualified in the experience I think you need" - I remain convinced that mental illness (as with many other things) can only be understood by people who have the misfortune to experience it at first hand. If you are "tearing your hair out" I'm not sure how helpful you are in your caring role. Sorry I know I seem to be nit picking or splitting hairs - it's just that us sufferers get a tad over sensitive at times.

[gamerchick]

Evidently

You sound like you think I have a choice so in other words you have no idea what care is needed just that I'm obviously doing it wrong.

Okie dokie then.

I'll leave you to your thread.

[pnutter]

Hi I have recently been alloted BPD too. Lucky us. Previously diagnosed bipolar.
Just started group therapy as I've been unwell for a few months.
I absolutely hate the issues I have and the effect on my children. I've recently had to give up my longterm career. Everyday is a struggle for survival basically.
I'm trying to exercise and eat better as I've gained weight and haven't been moving very much. Exercise helps. As long as I have the motivation to get out . I walk and this is lonely but I put headphones on.
I am also going to join a programme to stop using alcohol and prescription drugs to cope with my feelings. I self harm at my lowest.
To me BPD is having no sense of self. My family background I believe has caused this.
I have lost touch with friends and most of the time I'm alone . One dc still at home. I feel I am a good and loving mum but have immense guilt over the fact that my dc have seen me so low and so unable to function. Support worker I was allocated hasn't kept in touch.
At mid 40 I feel that this therapy is my last chance so I hope it works.

[Butterflywings168]

Welcome to the club pnutter

Controversy! I will be back when I have time to read everyone's posts properly.

[creamhearts]

Group in DBT is not about discussing sensitive issues no - it is to learn 'skills' - they talk vaguely about problem behaviour. Honestly, as a therapy I found it largely unhelpful (and the evidence base for it is shaky at best) but it is certainly not sitting round spilling your guts to strangers.

I think for relatives or carers watching you destroy yourself (BPD or not) must be incredibly hard. It is hard for me watching myself destroy myself.

I find the whole diagnosis rather depressing. I am going to start 1:1 psychotherapy soon but I am doubtful as to whether that will even work as nothing else really has. Anti-psychotics keep my psychotic thoughts under control but at the moment I seem to be in a deep depression I cannot shake myself out of.