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How to get professional support when you don't have BPD but they think you do?

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earthbound_misfit

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How to get professional support when you don't have BPD but they think you do?

... or you DO have BPD but presenting symptoms are not the classic ones so DBT is useless.
I feel overwhelmed, confused and tearful often. Kind of do all the time to some extent, it's worst/completely overwhelming when I wake up, I wander round the flat crying, pulling at myself and semi-involuntarily muttering things about "they dont understand" or "it's very bad" in a childlike voice. I feel utterly lost and alone, like I'm silently screaming but know there's no point cos no-one will come.
Things gradually get better throughout the day and I can seem 'normal' by evening.

However, recently more of the overwhelmed/confused/tearful stuff has been happening. I feel just so overwhelmed trying to keep going, every day everything I do is a drag, I'm constantly pushing myself, trying to keep a smile on and do things. And this is already at a really low level of functioning (i'm not employed, for example, and often don't go far from my flat). Yet I am feeling more overwhelmed and keep getting this foggy brain thing, where it's like my brain just shuts down and I can't interact with people, make basic decisions, or anything. Like my brain is only doing heartbeat/breathing and everything else is switched off. At these times I just break down and weep, and cannot control it at all or even really be 'present' somehow.

I'm struggling to do the most basic things because I am turning into a nervous wreck this way. And the CMHT have just discharged me cos they insist I have BPD (though they won't officially dignose it!) and so to them I am not trying and disagreeable cos I dont want to learn DBT skills (cos the things they help with are not the problem I have!). They just seem to blame me, leaving me more confused, overwhelmed and depressed. Honestly, if I had a diagnosis of depresson this'd be seen as serious neglect or something. They won't do home visits for a start. They just don't seem to understand that I try to please others and am exhausted, they just want me to do more of that and not actually help the problem! I see a therapist privately but I am scared she won't see me now they've gone (our contract specifically mentioned calling them; she wants me to have some emergency contact for safety).

I am scared and alone and am starting to feel suicide is the only way out. It is so terryfying feeling so incapable, I broke down in public yesterday with the brain fog thing and was so embarassed afterwards (and shaky for hours).
 
Toasted Crumpet

Toasted Crumpet

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I don't know but I am sorry they are treating you so badly, I think people with BPD do get badly treated by MH teams a lot of the time (whether you have it or not, once they decide you have).

I don't think it is fair of them to leave you without support or not to offer you some other form of therapy that might be more helpful for you. From how you describe you feelings you sound traumatised by something (you don't have to say what) and if DBT isn't helping what is the point of them forcing it on you. Also maybe they are cost cutting so will use any excuse to discharge you, it may have very little to do with how you are or are not responding to what they are delivering, it's not you it's them (imo).

Can you explain to your therapist what has happened and have someone else as your emergency contact like your GP?

I can relate to your feeling that you are screaming and that there is no point as no one will come. For me that feeling stems from childhood, with decent therapy I believe it can lessen, please don't give up.

Is it possible for you to query their decision to discharge you, maybe with the help of someone like an advocate? Or even for your therapist to intervene if she is able? x
 
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earthbound_misfit

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From how you describe you feelings you sound traumatised by something (you don't have to say what)
Thing is, I don't know what. I know things started to go downhill/first recall feeling like this as a preteen/early teens when I got yelled at a lot and the atmosphere at home was explosive (but not violent). In addition I've had some dreadful experiences with MH team and other related stuff like homelessness. (Mainly years back, and due to being rejected for being BPD when I sought help as a teen/early 20's).

Anyway I thought this is what I was traumatised about but it doesn't seem to tie in with the childlike feelings/fear, and doesn't explain why I was struggling back then in the first place. I'm worried something dreadful has happened that will be worse to remember.

On the other hand, I know I lost my best friend aged 3 (moved away, not dead, but might as well have been to me). And struggled to fit in with other kids and had my first dysfunctional/exploitative relationship straight after (with a poisonous little girl who made me do everything she said and bullied me). And my parents and teachers were cross with me because I didn't fit in and wasn't supposed to cry so much. And the school made me go to family counselling, and I dont know what happened but I think I was misinterpreted even then (I've seen the discharge letter and it says something about making me "less central in the family" or something that implies "child is acting up for attention"). More than anything I'd like to be tiny and curl up in someones lap and have them stroke my hair and tell me I'm loved and just be pleased I exist.

Got a bit distracted there but anyway, my point is is this enough to mess me up so much? I'm scared there's a secret lurking, but the bad feelings feel like they're related to not being good enough, not some secret monster or something.
 
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SomersetScorpio

SomersetScorpio

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Misfit..:hug1:
I'm so sorry you're at a low point and it sounds like you're struggling to function.


Got a bit distracted there but anyway, my point is is this enough to mess me up so much? I'm scared there's a secret lurking, but the bad feelings feel like they're related to not being good enough, not some secret monster or something.
I wouldn't like to say you're "messed up" because I don't think you are.
What I would say is that it doesn't always take a textbook traumatic incident to leave us with feelings of being overwhelmed, unable to cope and deeply emotionally disorientated.

From what I can recall of reading previous posts by you, you seem like a very sensitive person and so what might not seem upsetting to some will be more upsetting to you due to your emotional/empathetic nature (I speak from my own experience on this one!).

To be honest, any 'recovery' i've made has been no thanks whatsoever to the mental health team.
I don't care what they'll say about treating people with respect and equality, a BPD label changes everything - even if you no longer have any of the BPD symptoms, you're still not helped.

And so i've learned to get help out of the system and to do things to help myself.. meditation, being in spiritual circles, art journalling, creative college courses, reiki, massage, shamanic healing, walks in nature etc. etc.
At the moment, I also see a counsellor every week who has no idea of my diagnosis and is a huge source of support.

The trouble is, these things do cost money and i'm not sure how things are for you financially.
But you can be savvy and still access these things. My counsellor has rates for those on benefits and so my sessions are affordable. There are often Mind, Body and Spirit fayres local to me that offer alternative therapies for very little in a half hour 'taster' slot. My local college does a full body massage for a tenner - yes they're students, but they're good (I speak as a former massage student myself).

So yes, i'd advise you to seek out activities that truly nurture your soul and will help you feel you're on a path to some healing.
As sad and defeatist as this sounds, I can't afford to depend on the mental health team to help me because if I did i'd be hugely disappointed.
 
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Emmarose35

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Hi I can relate to what u are explaining about childhood... I used to feel this too - it was as if the mind was in denial ( and I still get it ) - ie ' there must have been something worse I can't remember or ' what I experienced wasn't enough to make me feel how I do ( over reaction).
But I now know that dysfunctional family / attachment problems was and is enough to affect my mh as much as it has...
And I have the belief now that humans are sensitive and we do get affected by what others do or don't do esp in our formative yrs ...
My experience of cmht wasn't great either - 'personality problems' the letter said...
All of what u describe sounds like me - low mood, not coping too well, brain not working properly, relationships, anxiety, low worth ..
Bpd and complex ptsd have similar traits ..
My mum I think was bpd ..
It's a strange society where u have to almost do u own research and conclusions but in hindsight it is the way for some to be finding other paths to help and not the rigid diagnosis that generally some bloke gives based on his limited experience ..
Labels can be helpful and unhelpful ..
Complex PTSD ( childhood trauma) is not in the uk diagnostic manual yet but is due to be in the new one being printed this yr ! :) (dsm 5)
Websites I have found very helpful - Google david hosier and Peter walker - they both come have complex PTSD and have both done extensive and wonderful work to
Inform people how to get recovery ...
There is always hope :) even when there feels none-
Mind and other charities run free groups etc ... And it is surprising what is offered low cost - for women etc -
12 step fellowships in my experience have been wonderful - there is one called acoa ( adult children of alcoholics and dysfunctional families ) if u family fits into either of those brackets
 
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earthbound_misfit

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Thanks for the replies.
Thing is, I know a lot of this stuff. About BPD, complex PTSD (which is not in the DSM V unfortunately, the only difference in that area is that they've finally decided sexual abuse is traumatic enough to get PTSD. Do you mean it'll be in the next ICD?). I know about how crappy they are to people - I experienced it firsthand pre-2007.

My problem is, I really don't have BPD, and I don't have problems in relationships - except with the mental health professionals who won't meet me halfway and don't want to know me. The only other relationship issues are the usual ones that occur when someone is struggling/chronically depressed and others don't understand/find it difficult. Like obviously if I'm stuggling to think straight it's harder to interact with my friends or i'm unable to leave the flat. Or sometimes people get frustrated that I don't cheer up quickly enough. Whereas the professionals make out that I must do crazy stuff which causes relationship problems, which in turn make me depressed.

So I am actually really struggling with something that is NOT what they say it is, for which I need help I cannot get. Luckily my finances are great atm (I've been granted PIP) so I can pay my therapist etc. However isn't it weird they will write me letters that get me HIGH RATE care for PIP, yet not offer ANY other support? It's also worrying about benefit reassessment, if I am not seeing them.

The trapped unfairness of it all is killing me, how do I dispute a diagnosis they wont even offically give me? They write it on letters and things yet I've never seen a psychiatrist with this team and it's WRONG. Yet pointing that out is seen as confirmation of it! I CANT COPE day to day, that is why I went crawling back to them begging for help. I'm not managing the basics, the ide of going to a alternative treatment fair or something is so far from what I can manage. I'm NOT OK, I often can't even pop to the corner shop (actually most of the time). What am I supposed to do? There isn't any other help I can get, and them doing this to me (remember I have a false criminal record and nurse training place withdrawn due to them) is making things much worse. If they were nice but vaguely unhelpful it'd be more manageable. Honestly I'm at the stage where people around me will start to leave/I'm already not seeing people as much because I'm not ME anymore, just a confused crying bundle in the corner.

Im sorry.
 
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earthbound_misfit

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I would just like to add, they shouldn't treat people who do have BPD so crappily either, it's just that they are not even looking at what symptoms I have nor offering treatment or support for them. And when I asked for help the very first time (about 10 yrs ago, in a different area) I presented as atypical depression and anxiety/trauma related and the slightly BPDish things only appeared IN RESPONSE to the crappy way I was treated. So, what did they expect if the treated someone with depression like that?
I wouldn't mind the BPD label so much if they treated the actual symptoms I have, but I had to fight for any help at all and then it was DBT skills or nothing.
 
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jadeeb

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Yep.. People are treated notoriously badly, who have BPD. I believe it's due to lack of research into BPD. I'd advise anyone to look at the Emergence website, then news, and there is a document on advise and guidance for MH professionals working with people with BPD. Email it to your CPN/worker. It's really good (y)
 
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Tiddle

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I think that DBT could help you a great deal - did you manage to finish the whole programme? You sound like you get very distressed most of the time. Most of the skills in DBT are about tolerating your distress and helping to regulate your emotions. It's not all about relationships - I personally found the inter personal skills no good to me because that's not where the problem lies but the distress tolerance and emotional regulation modules were helpful.

DBT aims to give you something to do when you are in that state but you do have to practise over and over until it becomes part of how you think. It's not about solving the underlying cause it's about managing the present once that is done you can move on to treating the underlying issues.

Could you possibly give DBT another chance - will they have you back ? Everything you talk about has been helped by DBT for people and DBT is no longer just for BPD it is being used for all kinds of mental health issues such as depression and eating disorders. Not all of it will apply to everyone I think it's best to take the bits you need work on them and don't worry about the rest.
 
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earthbound_misfit

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I think that DBT could help you a great deal - did you manage to finish the whole programme?
It wasn't a DBT programe, just "skills" with an occupational therapist. She actually understood my reservations and agreed that the presenting problem seems to be the depression. However, she was only working with me as she'd been asked specifically to do DBT skills, so when that seemed inappropriate I was just discharged. The head of the CMHT really doesn't like me (others have commented on how two-faced and nasty she seems, one of whom works with her!) and PD specialists were consulted, so it's all got twisted round and blamed on me. It's like they just cannot stop to think for one moment that maybe the diagnosis is wrong. They're like "Ooh, BPD person not engaging with DBT - we can't help", rather than "DBT is clearly inappropriate here - lets go back and look at the actual symptoms again".

I don't mean to be rude but you seem to be doing the same thing. My actual problem is I am constantly feeling overwhelmed, exhausted, struggling to concentrate or deal with decisions of any kind. Basic things seem to require huge amounts of concentration. At points recently this has got so severe that I am so overwhelmed my brain just sort of spaces out. This doesn't happen because I am so upset I dissociate, it's more like parts of my brain are just quietly burning out and shutting down, leaving me in the middle with tears streaming down my face. Actually, I might not even cry if it was fine to be like that - it's the fact that I'm expected to be doing things/reacting to people normally/going about my day that makes it more frightening and upsetting. If I could just curl up and go to sleep at these points it would be far less distressing.

It's the constant drag of trying to keep going every day, getting more and more exhausted, more of an effort to smile or do anything, it's just wearing me down. I don't dramatically want to die, I just don't have the energy to keep going with the most basic daily grind. It's like I'm not listening to my body, I just have to keep pushing and managing everything, and that's not sustainable so my body/brain keeps getting overloaded and shutting down. I need some kind of break, some kind of release. But all I get is having to hold everything togther becaue this quite serious depression is being ignored.

You sound like you get very distressed most of the time. Most of the skills in DBT are about tolerating your distress and helping to regulate your emotions.
Although I do sometimes get very distressed, especially involving memories, this is not the main problem at all. In fact, when I am distressed about something in particular I can work through it and articulate it, and find this sort of energizing and creates peace inside. Quite the reverse of the exhausted/tearful daily grind and confusion I am talking about here and is the main problem. By 'tearful' I mean that quiet, tears streaming down your face but not the energy to cry properly kind of thing. I'm just shattered, I want the whole world to go away and not want anything fro me because I've nothing left to give. I find myself grimacing instead of smiling and tears pricking at my eyes from the sheer exhaustion and despair of trying to hide it all, trying to keep going and force myself to do stuff to try and make my life better rather than giving in and staying in bed all day.

I'm sick to death of this "tolerating distress" from professionals. It's so invalidating - they seem to be saying you're obviously rubbish at coping with a tiny bit of distress, rather than seeing that actually you're in a LOT of distress and that's why it shows! I have a feeling it's not supposed to be like that and that's just crappy professionas though (ie. I get the idea of just being with the emotions - a good cry and actually feeling them is a release!). Because I DO tolerate distress, quite well I thought! What do they expect to see from me? I don't self-harm or anything. How am I supposed to demonstrate "distress tolerance" other than quiely getting on with it, which I already do? They seem to see me wanting help from them as a deficit in distress tolerance! By their (apparent) definition, I can only show good distress tolerance by having nothing to do with services at all! :scratcheshead: How do they ever acknowledge anyone has depression, rather than dismissing it as "low distress tolerance"?

Personally I think I'm struggling/exhausted due to poor sleep as my brain tries to sort through everything. I also have certain tendencies that mean I get emotionally drained (eg. feeling guilty for having emotion, automaticlly trying to please others, perfectionst tendencies, low self-worth - I'm working on them!) so I think I'm basically just emotionally, physically and spiritually knackered. It's just that the professionals don't recognise it, blinded as they are by intricate layers of misunderstandings, implications and subtle coercive blaming by the unscrupulous ones. I'm just trying to figureout why it matters so much what they think - I think it's because it's the NHS, "official", it's never behind me because those things stay on my record forever and potentially (and actually have) affected other areas of life. It's also hard struggling with this stuff without professional support, I suppose the invalidation is a big aspect. Kind of, if they understood it wold help me be less hard on myself instead of the guilt/shame they induce by making out i'm doing things all wrong.

Im really glad some people find DBT helpful and I'm not enitrely against it - more the way it's often delivered and the system it's delievered within make it all wrong. Although I've disagreed with your views on my particular situation I think it's just come from misunderstanding and I'm really glad you replied cos it's helped me get it all out!

EM
 
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Tiddle

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I really do get where you are coming from but from everything you have written you seem to be really struggling with feeling emotions in an extremely intense way and are in distress a lot of the time ( distress doesn't have to be wild out of control screaming it comes in many different forms depending on the individual )

You seem to be not able to engage with what was offered to you because you see that treatment as being for people with BPD and either you can't come to terms with having that diagnosis or you may be right and you don't have it all. Either way you are struggling with emotion. What DBT tries to teach are skills that help you regulate that emotion before it becomes a 'distress tolerance ' situation. I don't agree that DBT can be just delivered to you in the way that it was to you it needs to be done as a proper program with a 1-1 DBT therapist and a group and telephone skills coaching which is probably why you didn't seem to gain anything from it.

Regardless of a 'diagnosis' there are parts of DBT that could really help you but it is something that you really have to buy in to and practice what you learn over and over. You seem to have dismissed it because you feel it's only for BPD which it isn't DBT is now being used to treat many kinds of mental health conditions such as depression which you feel is the correct diagnosis for you. I have co morbid depression with BPD and the stuff I learnt does help.

Can I ask what it is you are seeking from the CMHT because in my experience they are recovery based they don't just offer comforting support for as long as you need it they try and give you treatment either to make a recovery or manage your illness independently. Unfortunately they aren't like family or friends which leaves those without family or friend's support like myself in a really tough situation.

The CMHT obviously feel that you wouldn't have been helped by CBT or something else because the problems you have seem to be far greater which is probably why they offered DBT.

I don't know what to suggest - can you get some meds to help you sleep as you say that is an issue. Could you go through with the DBT and be REALLY open to it and then after that they may see that you need something else like psychotherapy. Do you have meds for depression? Do you have any means to seek private therapy? Could you look in to help from charities such as mind and rethink? With CMHTs I've found you more often than not have to play the game be willing to ultimately get what you need.

Sadly lots of us are left to suffer because we aren't self harming all over the place or attempting suicide which is why we have to do everything we can for ourselves.
 
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earthbound_misfit

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It doesn't actually matter whether I have BPD or not, if they are willing to address the actual symptoms I am struggling with. However, the CMHT view it as BPD = DBT, or nothing. I know how to tolerate distress, I can sit with my emotions, not judge them, etc., lay them to one side. However, I'm not talking about intense emotions in this thread. I'm talking about the dead, sickening weight in my chest and the brain fog that engulfs me. I'm talking about feeling overwhelmed because there is too much to do everyday and I can't concentrate and have no energy. I'm actually dong very little, which is why it's weird it seems to be so draining and take so much effort. Because of trying to keep going like this, constantly pushing myself, when nothing seems fun or worth the effort, I feel exhausted with it all, and tearful at points - through sheer exhaustion. I keep pushing myself and pushing myself (eg. visiting family cos I felt I 'had to' rather than actually being up fo it) until I reach the stage where my brain just shuts down. Not because I'm emotional, just because it can't take any more. This in turn is frightening and upsetting.

Now, you seem to be suggesting that I learn to tolerate the upset caused by blanking out like this, and the emotions caused by feeling exhausted and overwhelmed by everything. Fine - but where does that leave me? I still have the original problem!

That's my point - they don't seem to recognise I am actually depressed, or whatever it is that is happening. I know I carry a lot of deeply buried hurt and confusion, which I am working through in private therapy. However the CMHT should be providing this. Even if they couldn't/wouldn't actually do anything, to have on record what I am actually struggling with woud really help - it's the misunderstandings, misrepresentation, and utter denial of the pain I'm in and that I'm actually trying so very hard to keep going and get better. I don't think a diagnosis should make a difference, but we both know that isn't true in services. So then it matters a lot that the diagnosis I'm given leads to treatment that actually helps the symptoms I have. You wonder what I am expecting from services? Well, whatever they would do if I was diagnosd as depression! - perhaps also a discharge to GP, but without the reams of lies and wilful misunderstandings, that are more painful than the stuff that sent me to services in the first place.



I reiterate: I am not having problems functioning because I am overwhelmed with emotion, I am getting emotional cos I feel so overwhelmed because of problems functioning!
 
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Emmarose35

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I relate ! Problems functioning- exhaustion -
And I've learnt that no body else knows what it's like only me - I've.
I can only push myself so far and sometimes I don't and collapse into bed for some days - rest has become so important ... And so has acceptance of where I am - I'm not where I was - and not where I want to be - I'm here and I take action where I can and don't where I cant ...

The distress of what I cant is too overwhelming so I don't go there anymore ...

I have hope but it has to be taken small and taken slow ...

Stopping fighting has been a good place for me - I've got to see what is within my reach and learning to be gentler on myself and others .��...
 
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earthbound_misfit

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2nd opinion doctor ?
I've wondered about this, but they've got me properly sticthed up - they'd just allocate me a doctor who's likely to agree with them. Even if it had to be someone completely outside the situation (from another CMHT?) they'd presumably have access to my notes so decisions would be based on that. If I appear different to my notes, it'll just be like the therapist I saw briefly 3 years ago - pointing out I'm not the same person as in my notes so I must be manipulative or lying! Individual professionals have understood (or appeared to?) why I am so wound up with the system, but my notes are full of judgements and rubbish. Even the person I was seeing claimed to understand that the depression is the presenting problem atm, and she can see why I'm distrustful of the system... but didn't seem willing or able to actually influence things. I was specifically allocated to her to do DBT skills, so even though I was like "Yey - she understands!" the only thing she was allowed to do was DBT. I felt so hurt and let down with the discharge letter because despite everything she said, she twisted all around to fit the CMHT narrative that I'm not ready and unwilling to engage. I was tempted to write a letter back, in the same style, pointing out how unwilling to engage she was (mysteriously no home visits for me so was blamed on me when I couldn't get there), and that despite having things clearly explained she obviously wasn't ready to work on the presenting issues and preferred to stick with the damaging narrative of the status quo.

I'm actually going to write a book. It's been brewing for some time. I already wrote a huge, thoughtfu rant about all this I may post here soon.

Thanks for the hugs :)
EM
 
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