Shocked/helpless/hopeless at what the CMHT have done

[elementofsurprise]

I'm sorry to post again but struggling to deal with this. Keeps waking me up too early, making me feel panicked and sort of tingle all over and shake whenever it pops into my head. I am livid about this; but I know I have no voice and the horrible trapped condemned feeling is making just feel hopeless and overwhelmed.

I went to see my GP this week because I've really been struggling. He is normally understanding, and tbh I know he can't really do anything but it helps to know there's a professionl somewhere who's updated on the situation and have a bit of support. He lamented that he couldn't refer me to the CMHT because they bounce referrals back/have asked him not to. Fine, normally he makes a joke or shares an insight from his time in mental health so I feel less rubbish and hopeless. However this time he went on about how it's my fault I can't see them because I don't trust them because of previous bad experiences!

This is the rubbish they put in my discharge letter last time. It doesn't make sense and seems horrily unfair - like saying to someone "Sorry, the last surgeon botched your operation so we won't let you see another one to correct the damage."

The thing is, I don't randomly bear a grudge against all MH professionals - I certainly don't go in there saying "You're all a bunch or bastards" or something. I am always honest, open etc. because otherwise how can they help me? Furthermore, the 'bad years'/bad treatment was almost a decade ago in a different geographical area, and I make a point of saying this and that I know the various rules and things have changed since then so clean slate as far as I'm concerned. If anything, I have form for being too forgiving and maybe trusting too much or too soon! Plus it's always me going to them for help - I am willing but they are not.

Unfortunately I can't not mention, or at least refer to, previous bad experiences becasue they are so central to my issues. I went through a lot of things that sort of hit me later - at the time I was just surviving day to day. It frightens me to look back and see how lost and vulnerabe I was, and how I fell through the cracks in the system because one organisation (MH services) ignored me/were actively unhelpful.

But even though I see that as a historical thing, they have kept repeatedy letting me down again - and yet see the problem as me feeling let down (wrote this is my notes repeatedly). Eg. having a CPN for a few months whilst waiting for therapy then randomly discharged from the CMHT altogether. Told repeatedly I was on a waiting list for therapy and to be patient, only to find out a year later I was not on the list. So obvs I do feel let down a bit by the current lot, but they've been using the "feeling let down by services" excuse to deny a service for years! Plus every time I have attempted to re-engage with them I naively believe maybe this time they will help.

The problem is they refuse to listen to me, or understand what I am saying, and put weird interpretations on things and hone in on minor things at the expense of underlying causes - and then blame me for 'not engaging'. Plus they seem to make a lot up/have a strange view, presumably due to crap in my notes from past arse-covering professionals (so it's ok if they judge based on the past/let that affect them working with me... ) They cannot grasp that I am not thick, nasty, or anything else, I just feel so dreadful it interferes with living and relationships. I know how to act, I just can't always do it. It's like telling someone with a broken leg they just need to get up and walk around. So to this end, the last person from the CMHT I saw, who when chatting seemed to really understand, was actually allocated to me to do "DBT skills". It was completely inappropriate (and tbh if they think DBT is the way they should enrol me on a proper course.) I had to keep explaining what I was actually struggling with.

It's so frustrating because they will make sympathetic noises and appear to listen but then go on to say/do something that shows they haven't listened at all. Plus they say one thing - eg. pointing out I seem to be severely depressed/this is the major presenting issue - but then trying to behaviouralise me out of it, as if I'm a naughty child. This last weekend was a really bad one, at these times I struggle to move, or form coherant sentences, and slur my words a bit. I feel cut off and distant and hopeless, and in a sort of wrenching but still dulled pain. Telling me how to interact with people just feels like chucking a few more bricks on someone who's already collapsed from the weight they're carrying. [FWIW what helped at the weekend was being allowed to just curl up on Significant Other's sofa, not talking, just a hand hold and bit of a cuddle while we watched TV. After a couple of hours I was much more 'normal'.]

I just feel really horriby condemned by services. The stuff that has happened in the past due to them has really affected me and restricted my life chances (esp. regarding patient notes and things affected by what's in them, plus being criminalised with the gleeful backing of professionals in very questionable circustances...). And so powerless, because they have the final say in this stuff and their word is taken as 'reality'. I feel sick, and frightened, and like they may have succeeded in slowly destroying me.

NB. I see a therapist privately but it feels like too little too late. I'm not sure how to deal with these feelings, so advice/experience welcome....

Thanks for reading, sorry it's so long.

Ok that's fine

Actually, butterflywings has been most helpful. Although she has used very strong language I know the hurt and confusion and hopelessness caused so can excuse/understand that. It is hepful to know I am not alone in my experiences of services. A lot of my experiences I have been very alone (eg. when I was homeless I knew no-one else who'd been in that position) and felt very frightened; it means so much just to know someone knows and understands. This is the same for lots of bad experiences, no? Especially where you feel in a powerless position like you won't be believed.

I'd also like to point out I don't have a current diagnosis of BPD - it was specifically removed due to being inappropriate. I aquired the label over a decade ago, without a proper assessment. I'd gone to them via the GP, not showing up in A&E od'ing or anything. No-one told me or explained to me what I'd been diagnosed with, what that meant, or why they'd decided that. Even though I can relate to some of the internal stuff, I didn't present in the 'expected' way of self harm, A&E and things - I just thought I needed to see a cusellor or something to work through the experieces that had led to these feelings (quite specific triggers during tween and teen years). I could't understand how I was sort of 'on the books' of services but had no actual treatment. For a while I had a CPN who would come and tell me I needed to grow up, snap out of it etc. I could be having an okish day and she'd make me feel awful. And they would be cross that I wasn't coping and when I asked about therapy or something to help me cope they just deflected, or point blank wouldn't answer. Thing is, I'd spent my teenage years trying to just keep going, beating myself up about struggling, and self-harming (VERY secretly) and just feeling I must be worthless. When I realised I was worth something (due to experiences after leaving home) but still struggled felt overcome with panic and pain at points, I thought MH services were the place to go for help fixing that. Yet they said, in these actual words "You shouldn't be struggling this much". So I just felt like a failure. There were various other things going on eg. an abusive relationship (was beginning to be abusive when first in touch with services/I hadnt realised it was yet) and a very odd and scary living situation (not many choices when you're 19), but any stress etc. caused by this was disregarded and I was treated like a bad person for struggling. They would not provide evidence for housing (ie. that I was seeing them) and in fact encouraged the council not to help me. The violent man in my home was on their books, but they would not help him when he took a turn for the worse (told me to call police), yet the police would not arrest him due to his illness (told me to call MH team). I therefore had no evidence of his threats and violence and so coud not get a hostel place (whilst looking for room to rent) on those grounds either.

Anyway, I had basically been fine for a while (this is 6 yrs after abive events), in fact in a really good place, when I started to get really depressed, spaced out, having memories and bad dreams of this time etc. It took me a while to twig what was happening, I was just in a painful fog and sort of shutting down. Since then my main symptoms are depressive ones. I wake up feeling horrendous and by the evening feel a bit more 'normal'. Although at the moment it is worse than usual.

After breaking down as mentioned, I had a CPN for a while. This had taken months and I'd really deteriorated in that time, but she was great, helped with benefit forms, listened to me, put me on the waiting list for therapy. However she randomly stopped seeing me, with no reason given. And assured me I was still on the waiting list for therapy which it later transpired I wasn't. Again, no explanation and I was passed from pillar to post and treated like a nuisance when I tried to find out what was going on.

I could go on, but I really cant be bothered. I'm trying to survive the pain I feel inside, trying to deal with the memories that make me feel frightened and helpless. Having to spell it out to someone who won't believe me is just soul destroying.

Oops, got a bit lost in it there, sorry. Meant to add, I understand sevices are ridiculously overstretched, but why not just say that? Say I don't meet the criteria, or the service doesn't exist - don't pretend it's me!

Also I have a random example, though very low-key, of the sort of weird nonsensical decisions and refusal to explain them...

So, some time ago, I had a two session 'assessment' with CMHT. In the first session they said I was unsuitabe for therapy. Wouldn't say why. I pointed out I'd been seeing a therapist privately (reduced rates but still had to go cap in hand to family which was humiliating) and had begun to understand my past better and feel there was hope. Suddenly they decide that actually the reason they don't need to do anything is becasue I'm seeing someone already! (Nevermind the short-term, insecure natue of the arrangement at that stage due to finances.) When I asked how they could consider that adequate if they felt it an unsuitable treatment, and whether they had an alternative, just got them giving me politician-type non-answers. All very odd, and frustrating - but one must never show frustration or they will label you 'difficult'!

At the second of these assessment appointments, the first thing she said was that it was about time I got some therapy from the NHS, and she could understand why I was so frustrated . Compete u-turn. When I asked why she'd changed her mind, she claimed she'd always thought I needed therapy but I'd said I was happy paying for it before. Which simply isn't true - at the same time I told her about the therapy, I'd expressed how difficult the financial situation was regarding it. And even if I had said I was happy paying, she'd not spoken to me since then so when would I have told her about my supposed change of mind?

I find it diffiuclt to point out these inconsistencies and question them effectively at the time, my brain is just going "ahh something doesnt add up there" and I can't coherently put my finger on it until afterwards. I'm probably perfect fodder for a stage magician thing :) but also unfortunately people can misdirect and confuse me, and I get flustered and then they're gone, or they decide they're right/I've agreed by my incoherance, or are annoyed with me being flustered.

[I actually know someone who used to work with the woman who did the above assessment, incidentally. And they have a similar view of her... I wonder if it's the thing where one personality leads the team, sort of thing?]

I take your point to an extent Lara, but I'm not sure patients should have to move on themselves without a clean slate and admittance of failings. We wouldn't accept it from other areas of the health system and we need to be able to hold hcps account. Sweeping it under the carpet just allows poor practice to continue. And I'm not sure the OP can move on if her current CMHT are blocking her access based on previous experiences.

It might be worth speaking to PALs and getting them to advocate or mediate for you. I think a conversation with your new CMHT would be useful, you need to know exactly why they have made this decision in order to move on for the future.

It is possible that you are describing my CMHT and this is an isolated issue. There are huge parts of your post that I recognise from my own 'care'. If it is take comfort from the fact that they've just been slaughtered by the CQC.

It sounds like your understandable frustrations with your previous treatment would be a barrier to any future treatment as you don't feel you can trust the service? But the service isn't taking any responsibility for helping you through that but using it as a reason to not treat you. Am I understanding that right?
Just reading through it all feels like going in circles so I can't imagine how frustrating it must be to be going through it. I think just writing it down like you have been is a good start to working through it all. Keep writing and getting it all out. Then maybe, if you feel able you could write something to take back to your GP so they could get an understanding of what you've been through and help you find a way forward.

LaraHusky
I know exactly what you're saying, thing is how to forget it? I thought I had forgotton it, I'd stuffed it away with all the other things I don't want to remember becaue I can't handle them/couldn't handle them at the time and just had to survive. It is these things that forced their way into my conscious mind after breaking down a few years ago. Things I'd never been able to deal with and it turned out supressing them didn't work. I get intrusive memories, nightmares, awake with stuff on my mind I've not though about in years and find I am desperately trying to make sense of it and move on... rather than feeling terrified of everyone and everything. I feel like I literally cannot make reality add up/don't know what reality is. I don't know the 'right' way to think or feel, and advice people give doesn't add up.

I had thought that being in a different area and with things slowly changing - eg. people labelled "BPD" no longer being automatically excluded - that it would be fine getting therapy/support. Plus my presentation was different, due to not actually having terrible stuff going on in my life at the time, and the fact that my problems were so clearly to do with stuff in the past I'd not dealt with... I mean, they said that themselves.

I realied a couple of years ago, in horror, that my relationship with MH services echoes an abusive realtionship. I need something from them and thus have to do whatever they want in an attempt to get that need met. The only way to be free is to walk away from them.

So far, so good. However, what is one supposed to do when getting so depressed you can barely move and are slurring your words? (This happened to me last weekend after a slow downhill.) The problem is everyone else is always trying to direct you back to services. Sometimes I just need some support or advice or just want to know someone else has been there and survived. Sometimes there's specific things I'm struggling with and feel I can't talk to anyone because they simply won't understand, or there's so much back story to explain.

I'm not actually trying to get back into services now, Im just trying to cope and stop eyeing up suicide, because though reluctant I am thinking logically I don't know a way out, I don't know how to end the pain or have hope, because things seem to be getting worse, more overwhelming, more terrifying and isolating.

I just keep trying and keep feeling more worn down, more hopeless and more worthless and like I'll never understand and be able to have a normal life. Now I'm older I'm scared I won't be 'ok' in time to have a relationship and DC. I haven't worked in five years, I originally thought I'd be off to therapy and 'better' enough to work in a few months. I am genuinely in a precarious position in life, but have no idea what is realistic and what is me having warped thinking/emotions, or how to change these when they are based on what I've experienced.

And I'm knackered. I keep waking up early unable to get back to sleep. I feel like I'm wading through treacle, and that my brain in somehow only running on 10% power, most of the time. At points I feel anxious and sick, and like reality looks weird (derealisation?) At other points I can barly communicate because I feel so low and dissociated, it takes real concentration to string together a sentence, and even then I lose half my vocabulary and sound like a child. It is also impossible at these times to understand anything more than simple sentences from others. I am just explaining the day-to-day reality because often people can't seem to grasp how difficult I'm finding things at the moment.

I guess I posted in part to get it off my chest, it's been making me feel like giving up or like I must be somehow an inferior human. (The replies here are not clear answers but the disagreements are fascinating, though not sure what to make of them yet.) I suppose I was just hoping for some people who understood and hopefully some tips or encouragement, but tbh I don't know, I just feel at the end of my tether and sort of posted in desperation.

Magpie That is a good idea about writing it down for the GP. It's very hard to explain in person because I feel so intensely misunderstood and condemned that I want to run away and kill myself; it's very hard to speak up.

The only thing on offer from the GP is antidepressants. He's not keen on giving those either, because I've tried loads and none have helped. (Citalopram put me in a weird state, sort of numb horror, rest only had side effects.) I'm fine with that. Primary care IAPT won't take me - too complex.

I think I need therapy (so continuing with private) but could do with some support. I don't know, I wish people could be supportive without sending me to GP/crisis team. I don't know what they think will happen beyond meds and therapy! But get the feeling it's somehow unacceptable to be struggling like I am, I can't get support of advice on actually how to cope, or even just someone who cares, because people think "Ooh this requires medics" and I cant get beyond that. I could do with a better support system but I am not in a place to build one.

I just think that you have got to get yourself out of the loop of rehashing your bad experiences somehow.

I know this. That is what I have spent the last five years trying to do. I'm not sat around dwelling on stuff for the fun of it, I'm having nightmares, intrusive memories, and waking with stuff on my mind. And by "stuff on my mind" I mean I feel disconected from reality, sick, exhausted and in fear, with a scene/memory playing out, often one I've not thought about for years. I'm not able to interact remotely normally at these times, and actually had to stop staying with my significant other overnight because he finds it so distressing seeing me have my morning weep/wandering around confused time. (And this is with me 'managing' these times as best I can; making a cuppa and trying to be calm, distractions etc.)

The only peace I have got before has been through understanding, making some kind of sense of events. As a basic example - suppose a friend snapped at you. Later, you find out that a string of difficult/upsetting events happened to them that day, so can see them snapping was a sign of stress, not anything personal. So eg. for me, realising there were others out there who have shared these (earlier) experiences with MH services, plus finding out how psychiatry/the structure/diagnoses work, helps me to some extent know it's not me, I'm not 'proved' worthless because their inadequate system has failed me. (This is just one example of difficult experiences, lots outside MH system.)

That is still a very simplistic example of what I mean... but I need to figure things out because I literally don't know what to think or how I should feel n any given moment, so dont know how to cope. Should I feel shame or is it residual toxic shame? Should I feel good about myself or am I actually an evil BPD bitch distorting the truth? If I'm feeling shite, I need to be able to tell myself realistic thoughts rather that spiralling negative ones. To do that I need to know what's real. And it matters because I don't know how to relate to others - I've been so hurt by people I've trusted, how do I know if it's me making a mistake, trusting the wrong people, or just coincidence? Where do I draw the lines and need to enforce my boundaries and where am I being overly paranoid? How do I know to speak up if someone's hurt me and where am I hurt simply because of previous experiences? Etc.

Every now and then I realise how restricted my daily life is, in order to manage. I don't know how to make it better, or better any faster, I'm worn out just trying to keep going. Why do people expect me to be able to pop off for a run/walk/do x,y,z when I am here saying I am not coping with the basics? I do as much as I can and do have a little garden that is nice, but I struggle to go out because of all the getting ready and people and having to act normal. I don't know how to cope and I want to give up. I just wish someone could understand that or help me with it without just giving me another mountain to climb.

I'd like to tell you that you shouldn't feel shame because I really believe you shouldn't. That you're not a bad person, you've got an illness. I know it's not that simple though.
I'll just say that I've read/heard what you've said and that you're not alone in your struggle even when it feels like it.
It can be hard not to respond with advice or suggestions but I respect that, that's not what you want or need right now.

How's it going with your private therapist Element?

Thak you Magpie

Jammy Sort of seem to have hit a wall. Although outside therapy something I think therapeutic happened? Three of us had been talking about parenting/injustices etc from youth... (none of us are parents yet!) I didn't think I'd said anything that bad but a conversation the next day with my friend led to him mentioning he thought my childhood was "neglectful bordering on abusive" and I got lost in a daze and cried on and off for a couple of hours. But it sort of felt good? I guess validation was the thing.

Therapy itself is weird atm because it feels like two different worlds, inside and outsie the therapy room. The rules are completely different each side of the door. So I don't know how to translate what I learn in therapy to the 'real world'. There are a few things where I can, but I don't seem to be feeling much better day to day (in fact has got worse but I think having mirena coil 2 months ago, then having it removed after 3 weeks due to sudden mood drop has influenced that. Just started period so hopefully getting back to normal there). I feel like I've lost so much, I don't know how to bear the pain, and it's too late for me because I can't make up the lost time (esp. practical things eg. employment).

Also there's thing like - how do I know not to make the same mistakes again? What about the things I can't control, that weren't my mistakes? It feels like the only safe thing is to hide completely, but obviously that would also be awful! I don't feel 'safe', I feel sort of on edge and like I'm desperately trying to figure everything out so it makes sense and I know what to do and how to make life work instead of being a frightening and uphill slog. And I am so, so tired. Having blood tests this week to see if physical cause.

I agree, it is pretty strange inside and outside the therapy door as you say. The thing I find so frustrating for me is the slow rate of change, I just want me fixed now please (or at least know how to deal with people successfully)!

I also struggled with how to translate the therapy into the real world. But I'm getting there, change is slow but I think that when you are trying to make big changes, or dealing with really painful stuff, it's about small increments, and practicing baby steps outside in the real world.

I struggle to see day-to-day improvements sometimes but my therapist is quite good at reminding me how far I have come. I hope your T is good and you are able to keep at it. As you say, MH choices and options are limited, especially when you have been through 'the ring' like you have, so I hope therapy works for you.

Hope you get to the bottom of your tiredness - is such a bugger isn't it!