Another way of looking at it might be that you cannot diagnose (in BPS terms) a functional disorder and at the same time claim the person has mental capacity because a functional disorder entails a failure to understand what is going on. Even for those who happily accept that they have seizures due to 'FND' if they go on having seizures then their minds must be getting things wrong to produce the seizures.
So there cannot be this third category that should not be given support. There are only two options, both of which merit support.
The way things have been twisted to be set up removes all the faith in that person and voice over themselves
no matter how many times they allowed themselves to be damaged by the lie of a compromise of ‘we’ll just try my way first and if you don’t improve we’ll support you in yours’ the support in your way never happens and no one ever takes responsibility for the harm they caused but denies that
and so the functional = inferences is a terror. It’s beyond ‘just’ health destroying it’s a removal of accountability and responsibility of others whilst placing all choices with them
I find it hard to get people to understand the life I’ve lived under because well it’s asking people to imagine removing so much you’d assume you don’t even see it. It’s a tyranny where as your body is broken you are punished for it and more control over yourself is removed by those who made those bad decisions in the first place. And your voice counts for nothing. Speaking or showing your body is proof of madness for it not fitting with their expectations and you know that so you are always having to deal with keeping yourself safe from this human nature thing no one else sees nevermind is on the rough end of.
we have strange dilemmas vs others if if you’ve never had a kind year in your life are you better of stopping thinking of your future that doesn’t add up and taking the little security you have to buy seeing what one quiet year without hassle and bullying feels like so that you’ve experienced it. Once. And maybe that would help your health more.
But to others who won’t , refuse to delve into the truth you are faced with they see it as madness. Writing off your future security. Not realising there is no future or security whilst your health is being made worse. So your choices are really invidious and different when you step back and think what do you have wanted out of your whole life
Not onky do you have no support or even someone who will be by your side in those little things you choose to have it actually gets undermined so you never even get those little bits of peace. That year of feeling what it was like in life to just not be a massive hassle to the extent someone has to let you know and make you miserable ‘as a nudge’ fir.
all these pseudo psychologists love to talk about expectations- of others and yourself - as if they’ve ’got it’ on that and it’s all perceptions. But the massive difference with me/cfs is it’s the opposite it’s leading your entire existence under imposition of others slap dash expectations or doing them to yourself self-bigot ing in an attempt that if you just please them then maybe removing that bullying will be less exertion than pushing your body so far beyond to meet them. Those are the choices we’ve lived under. Nudge - the profession of giving someone no good choices that work. An ends meeting existence is never on the table and you know it even in a lull because we’ve been there and know quiet just means someone hasn’t got fed up yet to the point they impose 'that frustration' on you (as if the inconvenience to them is worse than you experience daily).
it’s important we include those who have no support because fir me/cfs the hostile environment has made that to be a much much bigger proportion of the cohort and for a more extended time. I don’t know if it’s most of us or a niche but it can't fail to be more than other conditions. We know those with support who don't experience this need to be heard, and can offer a blueprint to what is better, and there are many who I massively appreciate get it and see it and are great supporters. But sometimes some of those people also inadvertently undermine us, don't want to hear it as it will scare them, and don't believe how vulnerable you are/what happens without a safety net (or someone who will disapprove of that sly dig someone who 'seems nice normally' will say to you on the street for no reason other than they can get away with it etc), or were in the think of the wrong timing to get it and unlucky with the demographic you are surrounded with (certain sectors seemed to be 'trained' more in certain simplistic ideas).
Because the social etiquette medal is given to those who say 'it's not always that bad' etc. And many of those who have it that bad are too ill to look convincing even if they can speak. So it's a sensitive topic. But for the opposite reasons people think - things can be so bad they aren't heard, or we assume there is some misunderstanding etc.
but when we do try and speak on ‘living’ in it and what that means we know the choices really are and the reality of what people do despite promises or hope very few believe us , so we feel we can’t even if we have the energy because that world seems so obscure and sad to others they assume it mustn’t be true and is somehow a product of a state of mind. Which takes more autonomy away as a risk.
Which reminds me of that thread by the Australian ME organisation (ME tip of tongue memory) which had 3 words in it: one of which was autonomy
which I think was a topic so fundamental, but so little-done yet that I mentally bookmarked it for a 'how do we even start but this is absolutely key to be bringing into discussions about pwme'
then it’s a mammoth task to describe in words that make sense to others. This is the right thread for this particular post because a lot of eg the RCP/LM and strange ideas of us just needing re-education - well it's all about having a right to who we are, as people, as well as safety and living etc. I just haven't got the elquency to nail that one right now.
