To feel like mental health services are abusing me

[Westendtown]

I’m struggling living alone and want to be in supported housing. For reference other professionals have said I’m clearly not doing well when I’ve had paramedics and police to my accommodation. They just won’t accept this and keep telling me I’m too capable for supported living because I’m a uni student and volunteer. I do this to give me a focus as I would completely spiral without it. Again they can’t see this. Nearly every night I’m crying and struggling. My rooms a mess with fruits flies and I don’t even know how to start sorting it. My hairs matted yet they are telling me I’m fine it feels like gas lighting as it’s making me like I’m making this up and maybe I’m fine. I have care in place but don’t feel it’s what I need as I’m still struggling a lot and don’t have hours when I really need them most at night. I’m at a loss what to do as they just won’t listen to me, do you think I’m attention seeking?

This is also a massively helpful and interesting post x

Op, you’ve been asked multiple times what kind of help you want/ what your ideal living situation looks like and you haven’t yet answered.

Why won’t you answer this? Lots of people here are knowledgeable about this area and may genuinely be able to help you.

I don't agree it's clear at all what the biggest problem OP is facing is. We don't know her at all and have very little information to go on.

We can infer from what OP has focussed on in what they see as the main issues.
"Going blue from an attempt"- OP rang services. Iirc this was in the last few days. They implied this has happened before. "Doesn't see why they're restricted with medication", despite all this, it also infers they are an OD risk.
So, harm to self risk is evidently current and present.
Thus current emotional dysregulation and care needing behaviour is present, relevant and has been evident in recent days.
OP is currently seeking support by posting on mumsnet about being declined for supported accommodation. Fixed on others having this service, but OP doesn't.
OP doesnt seem to be engaging with current care package in place, they have not explained why.
Sometimes the information focussed on by OP is telling as this is what they see as most significant.

Not really the person that was in coma always calls herself and ambulance thus it’s more misadventure than a genuine attempt but you’ve obviously seen them words and assumed they were more genuine which she isn’t. She ran off after calling herself and ambulance to ensure she was out in a 136 I don’t do this. I didn’t make a big scene actually I attended a&e was spoken to by a consultant he asked if I wanted to the see the mental health team I said no and went home calmly not really the actions of someone who wants attention. I stated I was blue as felt people on this thread were being dismissive. I’ve not spoken to anyone from the mental health team for nearly a month. I would happily pm you the full reasons I find them abusive don’t want to post it on here in case I’m identified. It’s not just because I’m not being offered supported housing,

I didn’t state I rang services you assumed as a way to belittle me. I do engage with the care package actually and the care company also think I need supported housing,

I really hope you can get the help you need. I would ask for a meeting with your care coordinator and write down beforehand the support you feel you need that is currently missing.

Why have you name changed in your own post?

@Nomatter78 there are lots of people on this thread keen to help you to help yourself. How can we support? I am not sure this thread gave you what you were looking for wanting.

Okay, so, why have you changed your poster name in your own post?
How DID services find you?
Given you haven't challenged other things in my post, everything else was correct in the post?
Myself and others have asked multiple times about your engagement in the care package and what it entails. But you have chosen not to reply.
Why would I choose to belittle someone I don't know? This tells me this is more of a cognitive dissonance, rather than this being based in fact. It's easier to say I'm belittling you than believing what I'm saying is true.

I would suggest you are listening to the care team as they are sympathetic to what you are saying.
Why is it you believe the care team and not the professionals who have a wealth of experience, know NICE guidelines and are qualified to say that its not appropriate?

Why is it that despite everyone stating a lot of negatives about supported living. You are still invested in this being the thing that rescues you? But, you cannot tell people what you do have at present so people can support you with their knowledge of services to make your current situation better?

It is so important in your care for you to be the person responsible in making the improvements. This will always open more doors and move your recovery along quicker. You do need to learn about you, what does autism mean to you in your life. What are your strengths and weaknesses? How do you manage your weaknesses. Are you able to recognise your emotions? Does this need work? How do you regulate your emotions? What helps? What makes things worse? Supported living won't do this for you.

You specifically said that you were found blue when police broke your door down. Now you say you actually calmly took yourself to A&E and didn't even see liaison, so the trip was a complete waste of everyone's time and it is highly likely that nobody in mental health services even knows that you attended! You have lied to us about this and thus I can only assume there are other lies in your posts too, and as such nobody can support you or offer advice. You arent able to do this yet, but I hope at some point in your journey this thread offers you a reflection of yourself and the unhelpful ways you behave and portray yourself to others. I hope you use it as a springboard to sort out your issues.

She hasn't said she took herself to A&E, calmly or otherwise. She said she attended. OP has posted in extreme distress and is probably not in the right frame of mind to be replying to each and every question in a logical and methodical manner and I am astonished at how people on here are talking to her.

OP where are your family in all this?

I don’t think it’s as clearcut as lying, but with the gaps in the story it’s not surprising people have not understood whatever actually happened and why. People have asked for a long time about the care package and you’ve only just said that you do engage with it, but then why are they not helping with the matted hair and unclean home? What can’t they do that means they think you need supported living? And is that them just agreeing with you in chats or a professional recommendation they’ve made? If the latter, then what kind of supported living, as people here in the field don’t think what you’re seeking exists and that what does wouldn’t be helpful. So to avoid more assumptions, could you answer those questions?

OP, how and why have you changed your name half way through your own thread? You can only post on a thread with your original name, the only way to by pass that is to create a completely new MN account. It feels a little a bit deceptive.

It's hardly deceptive unless she was pretending to be a different person (isn't that called sock puppeting?)

My guess is that she has two accounts, one for personal/identifying stuff and one for more lighthearted browsing, and accidentally was signed into the wrong account.

Not sure why posters are finding that hard to understand. But then I am autistic too so maybe it's just from thinking differently! (I only have one account for the record! But before the changes that meant your username remains the same throughout a thread, did mess up and accidentally post under different names on a thread and had to message MN pronto to change the name on an identifying post!)

All people attention seek, it's how we get our needs met on a daily basis. Attention seeking is saying to a partner 'ive had a shit day, can you cook tea and give me a cuddle please'. Attention needing (or care seeking, same thing different Trust terminology usually) is different. They are behaviours driven by mental illness, usually personality disorders, where the behaviour is created by an intense desire for support outside of norms, and then designed to force the other party to respond because of the nature of the risk.

This is a really interesting idea. You mention an "intense desire for support" - surely it's because of being in huge emotional pain that the person wants support? Some way of lessening their pain?

And "support outside of norms" is interesting too - who decides what is normal? I'm genuinely intrigued by this, because as we know (and has been shown on this thread) one person in huge emotional pain is deemed to be allowed X support, another not allowed that support, depending on diagnosis. So there isn't a "norm" as such. It doesn't seem fair to judge someone for wanting something that is outside of unclear norms.

Also, it's further complicated because in the general national consciousness we have this idea that someone struggling to cope because they feel horrific should "seek help" but actually the services feel this is "outside norms" as you put it, and thus unreasonable to ask for such help. When you're autistic especially, it makes it totally confusing to know what you're supposed to do, or think, as there are such different messages floating around.

Also your example of asking a partner to cook tea and have a cuddle is interesting. Because you seem to be saying this is reasonable/normal. But only someone with a partner can ask for that/have that. If OP, for example, had had a shit day too and wanted a hug and someone to cook tea, that's considered unreasonable because she doesn't have a partner to ask. Yet actually both of them would be wanting the same thing, and deserving of the same thing. I think it's important to make the distinction that it's not unreasonable to want something, even if for various reasons you can't have that thing. Because otherwise it can feel like somehow you're undeserving of it compared to other people.

You are attempting to force others into behaving in the way you deem appropriate by your behaviour. It isn't working, so now you are highly dysregulated, and without treatment and a personal desire to manage this need, will continue the cycle.

Again back to the "need" for attention or care from others being seen as the focus. What about addressing the underlying pain that leads to seeking comfort? Suppose OP hadn't had any care-seeking behaviours - she'd still be in pain and distress. It often seems like services just want people to go away and shut up, nevermind if they're still in agony and unable to live their lives.

Is there any way OP can approach services and ask for the emotional support she needs in a way that is direct and legitimate? Has she been driven to care-seeking behaviour because just asking them directly gets nowhere? (Many years ago when I first approached services, I explained the feelings/what I was struggling with and some leads as to trauma stuff, and asked for therapy so I could recover. Even this was deemed attention seeking and unworthy of help!)

I will add, I'm genuinely baffled by this stuff. I don't know what to think. On another thread people have urged me to seek help and seemed shocked my friends haven't stepped in (to do what, I don't know). But to me - and what the mental health team spent years brutally teaching me - I should be dealing with my emotions myself, and it's unreasonable to expect anyone to look after me. (Even though I may theoretically deserve that lovely partner to give me a hug and cook tea 😓).

This is a fantastic post. I really hope people respond to it and clarify.

I personally think some examples in the original post are being taken too literally and picked apart.

It sounds like you also have some emotional dysregulation and have tried to fit advice on this post, which is very niche and person specific, to your situation which is different.

I'd point out the big differences are using the words to clearly communicate the need.

In PD its actions, using very emotive words designed to cause a panic reaction in the other person, then once that perceived need is not met an escalation to make sure it is. The need can only be met in the way the person wants it to be.
OP has stated things like they said they turned blue as they didnt think they were taken seriously. This is why reactivity is not appropriate for this illness, because it is then learnt that someone gets attention if they tell staff they turn blue, so will do it in future and this becomes very unhelpful and dangerous.
In schizophrenia or bipolar it is, as this could indicate something else.

Let's be clear the post was not about them feeling distressed and seeking help. There is a wealth of information as to where to get help and support for various needs such as autism support. They asked AIBU, then posted about supported living. It was a resounding no, supported living is not appropriate.

OP hasn't had their needs met in the way they deemed appropriate, noone has said they dont have care needs, they have a care package.

What is very clearly missing to me is personal accountability. How is the OP taking steps to keep themselves safe.

Let's think of normal mood as a wave ~~~~~~~~~ not steady and constant. Dysregulation would be much greater than that. Smaller things can then cause emotional distress. Something that wouldnt ordinarily bother the same person who is regulated.
So, often with PD its about asking the healthcare professionals to do something or solve something, be the rescuer. But when that has been done and the need has not been met, the distress not reduced, there is then another focus.or the HCP is seen as the villain. For example if the OP was to have supported accommodation, they would realise this hasn't eased their distress as they perceived it would then identify something else which is wrong and someone else needs to fix. Again, the focus being on others solving things, others being the problem. Whereas asking what can I do to help myself is key. Personal responsibility and accountability, which every adult has to do.

Ultimately, a lot of people have explained about DBT where the focus is on distress tolerance, emotional regulation etc, which is important. This would help with their emotional distress.

Just because people aren't offering sympathy doesnt mean people aren't trying to help and support.

I would suggest anyone wanting support from healthcare professionals, the best way to communicate this is- I have noticed x, y, z, (reflection) I would like x, y, z (recovery goals) can you tell me what i should look into to achieve it (taking personal responsibility and accountability). Then going away doing it, coming back, I've done a,b,c thank you, either it helped or it didn't help because I found d, e, f (again more reflection and personal accountability). But removing, you need to, you haven't done this for me. Realistically its working with someone as opposed to accusing someone.
It is never about one action, it is always about a picture of what has been communicated, some via words, most via actions.

Just to say I will come back to that very well thought out post as it raises excellent questions but I have had a challenging day myself with my kids - I will reply!

@WalkLikeAnEgyptin
I personally think some examples in the original post are being taken too literally and picked apart

It's important to be precise and clear about meaning. If you're vague then people end up being judged on inconsistent feelings rather than clear criteria - which can lead to unfair judgements. If you're saying person A needs support but person B is showing attention-needing behaviour, there has to be clear rationale as to what the difference is and why, otherwise prejudice seeps in.

This is especially important when we're considering autism, because autistic people have a lifetime of being misunderstood or subtly mistreated because people can just tell something is different about them (us!) so have an unconscious prejudice. And for the autistic person, it's important to clearly understand differences between behaviours that may on the surface appear the same, and to understand the exact expectations of others. For us autistic people we're always trying to understand the unspoken "rules" so we get it right, often accompanied by low self-worth from a lifetime of being treated as "less than" so it's particularly high stakes emotionally if we appear to be being treated or judged more harshly than others (like a confirmation of low worth). This is why OP has got fixated on why others get support that she does not - she's trying to logic her way to understanding, or to getting her needs met.

I'd point out the big differences are using the words to clearly communicate the need.

Interesting. And the rest of what you say and how you've explained it makes sense. I think where it seemed nonsensical to me is my experience of not being listened to when I calmly explained in words. And others I know, who's behaviours escalated because they weren't being listened to and were trying to convey the emotional distress they were in. Obviously if someone can actually just honestly explain and be met with empathy and appropriate support/direction, but still escalated in behaviours, it could be as you describe.

I think what you say about personal responsibility is interesting. Firstly, I think the OP is showing signs of taking responsibility - she's studying and volunteering, trying to broaden her life, not just sitting back moaning about feeling shit. I actually think that she's attempting to take responsibility by seeking supported accommodation - she may be misguided in this, but at a basic level she's identified something she thinks will help and has tried to access it.

Just because people aren't offering sympathy doesnt mean people aren't trying to help and support.

Don't you think though that when people are struggling they need sympathy and kindness? (And that it's this that enables them to feel that others are trying to be helpful and supportive?) Not only that, of course, but alongside constructive stuff. Someone to say "well done" for the things they're getting right, and to gently and kindly explain if they're going wrong somewhere. To understand the pain and shame associated with those bits, and make sure the person feels safe and worthwhile so they can be brutally honest with themselves. It's just that a lot of this "personal responsibility" stuff can seem to forget the humanity of people, the human needs of belonging, sharing, etc.

Again, I respect you have lived experience of these difficulties. However, you are projecting your own experiences onto someone else's post and trying to find answers from your own experiences, which has derailed the thread.

As I highlighted the response was a resounding supported living is inappropriate.

I'm not sure what your first point is. I was referring to the respondents who said about attention seeking and this example being over analysed.

Everyone is individual, therefore everyone's situation needs to be taken individually. There is no one size fits all in mental health, but having said that there are attempts to put pathways in place.
There is VERY CLEAR guidance about treatment in the nice guidelines. There are care plans provided which provide VERY CLEAR communication. There is VERY CLEAR information on the mind website etc.

Autism is a spectrum condition which is predominantly characterised by social interaction and communication difficulty. Meaning your difficulties and the OPs difficulties will not be the same nor will your life events, thus explaining from your point of view to me helps you understand the post, but is not helpful to put your experiences to explain this post. When it is actually about supported living, your needs will be very different.

Interestingly throughout your post you are making the presumption I do not have autism and am not neurodivergent. My point is, as well meaning as your post is there are a lot of assumptions, which you have identified PD care is full of. There is a lot we dont know, hence I am trying to explain more broadly or pull together information which has been communicated in the post.

I'd suggest taking responsibility would be more focussed on reducing risk to self, given last attempt was Thursday. We do not know the specific circumstances about university, and volunteering. I do know that at times of high distress attendance can also reduce, we don't know if it has or not.

Do you think EVERY situation requires sympathy. Given autism can often be very rules based, it can sometimes be a very abstract concept for people to be sympathetic, ie saying I'm sorry you feel that way which is sympathy NOT empathy. Empathy being preferred in health services as you are meeting the person where they are. Therefore explaining rationale or how to reduce distress and overwhelm can be better, which is what other posters have done. To be honest even breaking tasks down can help. An example which I have regularly seen of sympathy is someone's needs are not met, the people trying to meet the need within a care team, but its too challenging tell the individual their needs need to be met by x, y or z or a service which doesnt exist. Thus breaking down the self esteem of a capable individual, breaking down the relationship with a care team and removing a focus from recovery to "i should have something else". I am not stating this is the case here, but a common example of inappropriate sympathy.

@WalkLikeAnEgyptin
I am not just drawing from my direct experiences. I am speaking about common themes that have come up amongst those labelled PD, especially neurodivergent women. People I've known or supported, and stuff written by people in these situations/with these difficulties.

I'm unsure why you think OPs experiences are so wildly different when she has said she has autism too.

Whether we're talking about sympathy or empathy my point is that there needs to be a humane, kind side that is so often lacking. And yes, if someone is in genuine emotional distress then I think sympathy and/or empathy is vital. I did explain it needed to be alongside constructive stuff.
I'm not sure "explaining rationale or how to reduce distress and overwhelm" is showing empathy, or maybe it's sympathy that's needed. Obviously explaining this stuff is helpful - essential, even - but I think there's still an element that the person needs to feel cared about, or that they're not alone, or whatever. A human element that they wouldn't get from merely reading the same info. (No matter how useful the info itself is.) Bearing in mind the invalidating experiences that lead to these diagnoses.

Confused by this bit:

An example which I have regularly seen of sympathy is someone's needs are not met, the people trying to meet the need within a care team, but its too challenging tell the individual their needs need to be met by x, y or z or a service which doesnt exist. Thus breaking down the self esteem of a capable individual, breaking down the relationship with a care team and removing a focus from recovery to "i should have something else". I am not stating this is the case here, but a common example of inappropriate sympathy.

Do you mean that they're not telling the person another service is suitable, or that there isn't a suitable service, out of sympathy?
If so, that is obviously very unhelpful. But surely there's a sympathetic way of pointing someone in the direction of the right service? Or even admitting there isn't a suitable service.

Again, as I've said the OP was AIBU regarding supported living. I've tried to bring it back to the original topic.

Yes, she was being unreasonable. People were looking for alternatives and additional support to supported living.

To keep the thread on track, I will try to keep it brief.
I suggest you re read my post as I have already answered some of your questions.

Autism will not impact you the same way it impacts the OP. Whilst there may be similarities, it will not be the same. This is why sympathy is not as good as empathy.

I am not saying this is the case for OP.
I've experienced care teams inappropriately tell individuals they need supported living as they find the person too challenging to engage as opposed to using different methods to engage or look at increase support. They were wholly unqualified to tell the person this, they were just agreeing out of sympathy, they did not have complete knowledge on the person or their risks and did not know anything about panel etc. Sympathy can be damaging.

Surely, rather than projecting bad experiences, a better focus would be "what has helped or improved communication". People will only write posts, reach out, vent when they are frustrated etc. But they won't tell you about the good experiences, when they have made themselves heard.
Again taking responsibility is so important, whether its your impact on an interaction or keeping yourself safe.
Realistically, keeping the rhetoric as services are bad, they don't listen to me or us, is keeping the problem going as you have a preconceived idea of how interactions will turn out, thus it will be a self fulfilling prophecy. It's hard, but sometimes you have to challenge your cognitive loop to get a different outcome.

@WalkLikeAnEgyptin

I think we'll have to agree to disagree over what "sympathy" covers. Suggesting something unsuitable for the individual - IMO - is not sympathy, it's something else. I think you can sympathise with someone's troibles but go on to suggest something helpful!

As for issues with services - surely knowing what issues can arise means the obvious thing is to avoid those pitfalls/mistakes. So I've been trying to convey, for example, that it's important the individual has a legitimate way to be heard when they communicate their distress or ask for support (to avoid potential escalation into care-seeking behaviours).

Again, please re read my posts, its very clear you have not fully read them and reacted to specifics rather than reading them as a whole.

My point was sympathy versus empathy. You are describing empathy not sympathy, but describing it as sympathy, at its rawest form its, I'm sorry you feel that way, nothing more. Sympathy for most people IS unhelpful, empathy is the appropriate response. It's a very specific term and underpins most things within mental health care. Please look it up.

Again your final point is about distress intolerance. But at the point of seeking support for this distress, a person is already being reactive and already dysregulated, thus if the hcp doesnt respond in the way you percieve you need them to it will escalate. But because of the approach they must follow- boundaried and not fall into rescuer, it will never meet the perceived need. Your post very much blames the hcp for the person with PD escalating rather than taking responsibility and using coping strategies, which lets be honest are trial and error, and developed and learnt over time. Again, maybe suggesting communication which has worked for you rather than criticising the hcp?

If you read and look into DBT this will make more sense to you.
The whole point is PD service users don't "ask for support" in the same way. It's more of an "ask to be rescued" or "ask for problems to be solved" "ask for someone to do something for you".

It's interesting because it really comes across as the locus of control being external as opposed to internal. People with an internal locus of control believe their actions and choices determine their outcomes, while those with an external locus of control attribute outcomes to external forces like other people. This is exactly what I mean about responsibility. People with PD are more likely to have an external locus of control.