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?

When I was 'just' severely depressed and suicidal last year social services decided the kids were fine. Now the consultant has told them I have this label they believe they are at "significant risk" and had the cheek to ask dh if he was 'supervising' them this weekend. Is it any wonder we get the feeling our families are better off without us ....
Now have the added hassle of having to go thro a social services 'interview' next week - any tips on what they might be looking for / likely to do?

Such an interesting thread.

I too have the dreaded bpd label but now consider myself to be well.

I was repeatedly sectioned for over ten years as my life lolled from one crisis to another. I tried many treatments both drug and talking including DBT and CAT but found they alongside with awful hospital admissions exacerbated the problems i had. I suffered more trauma at the hands of my NHS trust than i had before I entered secondary services. I was given heroin inside a psych ward, physically attacked and sexually assaulted at the hands of a male patient however it was the attitude of ignorant staff that hurt me most of all. It is almost like they thought I was somehow choosing this hell. I lost everything in this time, my potential career in medicine, my friends, my sporting success, the relationship with my family, my identity to name but a few. I was judged as 'manipulative' and 'attention seeking' despite my first diagnosis (which still stands) being bipolar type 1.

After having children (much to everyones horror) I had someone else to get better for and researched alternative approaches. I came across the recovery model which is based on the idea 'what has happened to you rather than what is wrong with you?' I knew that if I was stable enough i could access psychoanalytic therapy so worked hard to get to that position. I thought if i could get to the bottom of what happened in my childhood i may be able to move forward. Despite my psychiatrists promise of this therapy, the specialist refused on the grounds it was too risky for me having young children.

I felt the service had failed me again. However I was in a much stronger place having avoided admission for 12 months and taken more control over my life. I had also come across the CHIME factors of recovery. It made so much sense to me. People need to feel connected to others, they need hope, identity, meaningful activity and empowerment. All these things had been taken by bpd and a heady mix of antipsychotics and benzos certainly were not going to give it back.

I was then very fortunate to get handed an opportunity to get involved with mental health service development. It has changed my life. I have met and made friends with other service users many with a pd diagnosis. I have heard their stories of recovery and been given a sense of hope that people do get well. One lady didn't speak for 12 years and weighed 4 stones and now is the editor of a magazine! I have got to share my experiences of services with staff in order to help improve things. The shame I once felt is now gone, I am proud to be an expert by my experiences. It has totally reframed how I think of those ten years. I thought I had wasted my life but now I am proud of what I survived. It has made me a better person and undoubtedly a better mum.

I have co-taught a number of sessions at a new recovery college I am now hopeful of a paid role and potentially a career with the NHS and I am excited for the future.

Im not suggesting that getting involved with service development is the answer for everyone but i truly believe in the principals of recovery. I dont live a symptom free life but i live a life i consider worth living and i never thought that would be possible.

That is brilliant madeuplovesong44 thankyou so much for sharing that, it gives real hope hearing outcomes like this (although I get that everything is ongoing really isn't it, things don't just end, life goes on). I just wish this kind of positivity was put forward via the NHS - not the usual negative b*llshit that does little except perpetuate our self loathing and consign us to life on the scrapheap of life. I feel strongly that exploring what I have is the way forward, and I definitely want to share this with others that are similarly suffering, because there has to be a better way than what they can offer us! I think - and feel, intuitively - that we need to be helping our own, and educating the medical profession in what we need, rather than having their ideas imposed upon us, often to detrimental effect.

I am going to come back on here and post again in morning as lots to think about, also what you said elementofsurprise, that got me thinking (oh heck ; ) ) but I'm so tired this evening I'll pop back in in the morning when my head is a bit clearer/am more awake. I'm loving that this thread is here, it's good to be supporting each other instead of being subjected to the usual judgemental crap isn't it? : )

I think it is the unconscious knowledge of this truth is what makes them treat us so badly in the first place. We show them up. We feel, collectively and communally we'd be society's conscience, if they listened.

• and oh my word, elementofsurprise, yes.

There is some real truth in this.

I have a theory that the majority of people are deeply uncomfortable around other people's pain. You only have to look at how we deal with death in the west, people get uncomfortable, cross the road rather than speak to someone recently bereaved etc - all that stuff. I think deep suffering (of the kind we have often known, both in childhood, and bearing the effects of this) actually triggers some of the medical profession because it's outside of their own experience, perhaps, or because they get frustrated that they can't fix it with drugs. So we are on receiving end of their frustration - it's almost like bully mentality actually. Kind of sniffing out our weakness (not hard, it's raw, and exposed) and then homing in on it. Is our suffering really such a threat to people? I wonder if on some subconscious level they know we have beebn to places they will never go, and that the flipside of that, if we can reach the other side, get through it, is that we have untold riches, wisdom we can share with others, that is actually a gift? I wonder ... it's a thought isn't it, and ties in with the shamanic approach that those that suffer so-called mental illness are actually very sensitive and also have the potential to be gifted healers because of their experiences. This is kind of what you are saying too madeuplovesong44 - you used your experiences to help others. Wouldn't t be welcome if the 'medical profession' could stop slating us and start empowering us? Just a thought.

• although I suspect that we have to empower ourselves - I was thinking today that I'm actually going to give up on the idea that the NHS can offer me anything, (CBT if I wait 22 months is all that's on offer anyway) - and that it's going to have to be DIY. I just question if the system can offer me anything. Other than reinforcing the idea that I'm useless, and highly strung.

I also have a bipolar diagnosis - officially so-called 'soft' bipolar (cyclothymia) - but I suspect that bipolar 2 is more likely. It only really rears its ugly head when I'm very stressed out, so I'm trying to limit stress these days. I gave up alcohol and fags not long agao and that seems to be helping a lot, although I live the life of a nun.

I was diagnosed with 'traits of' BPD / EUPD. (I also have recurrent depressive disorder, and psychosis, & epilepsy).

Before I had a psychotic episode I was actually diagnosed with full BPD & the way I was treated by the CMHT was not very nice. Their attitude soon changed when it was clear I was psychotic & also when they decided I only have 'traits'. So they are helpful to me now & take me seriously when they didn't before.

It just proves that BPD is a real stigma within the MH services! It's not right at all. I even went on a study day at work about mental health, there was a CPN present and she actually said, ''oh the worst patients are those with EUPD'' - I was nearly in tears but did not let on that I have these problems as none of my colleagues know.

I really feel for people who have the full BPD, because having traits of it is bad enough. I have a real problem with anger which can make me suicidal or violent towards myself. I know I need help to deal with that. I used to have bad mood swings but I'm on so many meds (anti-depressants, anti-psychotics etc etc) that it's not a problem now!
I think I may need my anti-psychotic dose increased as I'm getting paranoid again but that's not to do with the BPD.

By the way there is a Facebook page for the UK & US you can 'like' called 'Make BPD Stigma History'. It is currently publishing photos of men & women who have BPD with the phrase ''I have BPD and I am not ashamed''. They also publish some useful memes.

Sorry the FB page is called 'Make BPD Stigma Free' actually (I just checked).

Thanks for posting about that fb link Latara - I don't do fb anymore but it sounds like a positive initiative ... I read an article a while back about 'slebs' that probably have bpd, in the states medical insurance doesn't cover it so a lot of people (in general) say they're bipolar to get past that - and also to avoid the bpd stigma : ( Unfortunately I think the stigma is still so great that coming out of the bpd closet is still a mixed experience in terms of people's reactions. Unfortunately as I think was mentioned earlier in this thread all anyone has to do is goog le bpd and there are plenty of sites (usually the higher ranking ones as well, bloody typical) that are only too willing to tell everyone to 'run a mile' and what bunny boilers we all are. That's what we are up against, not to mention the stigma in the mental health services. That's a whole other charming kettle of fish, but as regards the being out and proud on the bpd front, it strikes me that you have to break eggs to make an omelette - only way to raise awareness/bust stigma is for us to be open; yet still so much stigma we are placing ourselves in a vulnerable position in doing so (and we are not always best equipped for that one are we :( ) and also I feel like a bit of a sacrificial lamb - raise head above parapet, may well get hurt/shot down, but flip side is I contribute to greater good (hopefully) to raise awareness/break down stigma towards us all. Either way it's a battle. And then I think Christ why am I always having to fight? It's bad enough having this .. to have to doubly fight, against the stigma, it just seems completely unfair. And that's because it is. It is unfair, for all of us. It's them with the problem (stigma) not us, yet they make it our problem. It reminds me a bit of how it was twenty five years ago, with regards to homophobia. Lots of people stood up to be counted, and now we have much less homophobia/better LGBT rights. But none of that happened without a struggle, or without casualties. I kind of feel like mental health is in a similar place now, in terms of raising awareness/breaking down prejudice/stigma.

Re; your treatment at hands of CMHT - I always have this feeling that they are very nice (to point of being a tad patronising, if am honest, although I feel a bit mean saying that as know they mean well) but may well have fixed ideas about me/my 'condition' when I am out of earshot. I am pretty sure they probably generalise about us all, you know 'hard to treat' - as your heartbreaking account of what you heard on your study day bears out. It's so cruel, and unfair. I felt like giving you a big hug when I read that. I like to think I'd have reacted by getting all uppity and speaking out, but in reality I know I'd have felt and reacted exactly as you did, through extreme hurt. I completely get that. It also shows a certain arrogance on the part of the MH team member concerned, this notion that service users are 'other' - how could anyone with a mental health problem possibly be at that workshop/or work within the service? That's telling in itself. And a dangerous assumption as the stats bear out 1 in 4 of us have a mental health issue to contend with - so the chances are that many of those people exist within the service itself, working within it. Not doing much to actively challenge stigma saying stuff like that is she? I'd love some mental health professionals to read this thread and see what it feels like, being on the receiving end of this stigma. Maybe we all need to put together workshops to go and educate mental health teams about the damage this stigma does. And to tell them it's their problem, not professional, and they need to sort it out ; )

• oh and when I got diagnosed, they were at great pains to tell me 1) that I was at the absolute lower end of the scale with this (felt like saying - only reason I am is because I've bloody well battled on my own all my life to try and get better and understand something I didn't even have a name for, and to heal myself of it, with very many casualties on the way in terms of broken relationships and friendships, general life chaos, unmanageable mood swings, suicidal urges, black depression - we all know the score - and with NO help from NHS) - if they'd have seen me at 20 years old they wouldn't have been saying I was at the 'lower end' of the scale , believe me. And it was as if that made me low priority - because I can speak calmly, and they said this, I am 'intelligent and have good insight' - I know they filed me under low risk/low priority. Well what am I supposed to do - crawl into their offices screaming and crying because of how gut wrenching the emotional pain can be? Then what., would I be 'high priority' then? Or 'attention seeking'? If we present as the sane individuals that we are (not bunny boilers, folks! Sorry!) then it's as if that's all they see, whatever we present with. If that isn't black and white thinking I don't know what is, yet that's the one we are often accused of isn't it : ) It's over-simplification at best, and bloody dangerous at worst. It frustrates the hello out of me, not just for myself, but for others.

2. I was told I wasn't psychotic (but believe me I've had times in my life when my grip on reality has been tenuous, to say the least - never had hallucinations, but have certainly had times when my thinking has overtaken the reality of a situation, to the detriment of my mental health) but given an 'open' prescription for an anti-psychotic drug if I ever wanted it, as it apparently curbs impulsiveness. Fair enough, never used it, but if I get to impulsiveness stage that's a massive red light - usually means I am severely stressed out, and in 'emotionally unstable' territory. Not sure how much use drugs would be in that situation - other than be the pharmaceutical equivalent of sitting on my hands so I didn't type a big rant on the internet. I suppose that may help on the 'damage limitation' front - but really there needs to be more on offer than 'here's some drugs' or 'off you go' doesn't there?

I probably sound like a right moaning git, but I am frustrated at the lack of provision/help, not just for those of us with bpd, but for all of us that struggle with mental health issues, right across the board. It's all wrong, the system is fucked and needs a massive overhaul.

My NHS Psychologist actually told me NOT to look online at the BPD sites especially the American ones as they can be very upsetting for a person with BPD - I did actually have a look one day & she was right, they are all about ''walking on eggshells'' & ''how to disengage'' from your relationship with the person with BPD.
Considering I have some good close friends, a close family & nice colleagues who all seem to want me around, I didn't recognise myself from the descriptions on those sites.
Seriously if you haven't looked then don't be tempted!

I am "intelligent and have good insight".....how often this has been said to me to try and explain the lack of support. Just because they see you as "low risk" shouldn't exclude you from accessing services and support. Bpd is awful to be told you have.

Oh gawd yes, Latara - those sites are so hurtful, I'd go so far as say they are down right dangerous/life threatening : ( Suppose someone has a friend/partner just diagnosed, they google BPD .. and land up there. Those bits about ''how to disengage'' from your relationship with someone with BPD - that couldn't be more hurtful if it tried to be, abandonment and rejection is something we are only too familiar with/fearful of; stigma is rife - and what do these sites do? Perpetuate the stigma, that we are all bunny boilers, and then tell those that care about us to abandon us. How cruel is that? No one should ever put up with abusive behaviour, regardless - but telling someone who may well have an instinct to try and understand/stay around and support us, to abandon us and do a runner without question is cruel beyond belief. I'd like to see some of these sites shut down, I really would. They do nothing to increase compassion and understanding, and everything to perpetuate the stigma and prejudice around those of us with BPD. Havn't we got enough of a hellish existence without sites like that making it even worse?

'' am "intelligent and have good insight".....how often this has been said to me to try and explain the lack of support. Just because they see you as "low risk" shouldn't exclude you from accessing services and support. Bpd is awful to be told you have.''

• brightandbreezyNot - YES. That, in a nutshell, has been my experience to date. It also worries me greatly that they will diagnose and then not have the support to back that up. There seems to be little awareness or acknowledgement of how traumatic it is to be told you have this - or any mental health condition. They wouldn't diagnose cancer and then say ''ok, off you go for nearly two years, and then we'll sort you out a bit of treatment, not the right treatment, but the bit we can cobble together '' - yet that's what happens so often. I'm no nearer accessing any help than I have been for the last 32 years (I believe my BPD kicked in at around age 13, although I clearly had issues before that) - other than being on a waiting list for CBT that is nearly two years long. I went into a very dark depression after I got diagnosed, am still in it, it's like my lights have gone out and I'm not sure I'll ever be who I was before, I feel traumatised by the diagnosis and subsequent lack of support tbh.

Yes i am fed up of the stigma. I put a post on here with BPD in the title and got no replies! People see BPD sufferers as attention seeking and manipulative but that is not the case. I completed uni degree and have a decent job so success can be had. People say i am eccentric which i dont mind i guess. I had been misdiagnosed for years and 2 years ago on psych ward i had this diagnosis. It made so much sense. Whilst it did not make things any less distressing it explained a lot and finally felt some relief. Funnily before when i was thought to have depression mental health team did not want to know now i have a psych, new meds and on list for psychodynamic therapy. Without the diagnosis i would have still been in same position. I dont misuse any substances my issues are spending on things i do not need ( not getting into debt but broke by payday), self harming regularly, eating disorder, mood swings particularly anger dissociation, deep depression, paranoia, health anxiety, self loathing, emptiness/loneliness, inadequacy list can go on. I am just good at putting a mask on for work but when home time comes i am exhausted but its worth it for the normality. I dont know how this sound sometimes when i type things it comes out wrongly but i do dread telling anyone i have it and my employers do not know. pnutter please dont lose hope things can get better they may never completely go away but coping strategies can be learned which really help.