'Moments of truth' listing what was missing or warped by bad paradigm and need to be high on agenda for current talks and those who won't get those op

'Moments of truth' listing what was missing or warped by bad paradigm and need to be high on agenda for current talks and those who won't get those opportunities back

I struggled to get the title right on this. I might have missed other posts doing this well and really want an 'area' started off properly on this, given discussions are happening for the first time at the right levels about ME care.

- right info on whether you will recover when considering work decisions
- right info on health status when doing courses, jobs and getting adjustments or letters of consideration
- right info on prognosis and personal likelihoods so people can plan their lives, careers and finances as other normal EDIT* (and ill with other conditions) people are entitled to
- pensions, accessing benefits in time when those around you think you are 'giving up' because of the nasty brainwashing so your own family pressures you to give up what you needed
- lifelong services so that when the moments of truth happen you have someone who knows you and can write a letter - but also have told us we weren't going to get better after a few months off with no stress in no uncertain terms.

And these things all snowball into each other where you get worse jobs with less flexibility due to worse outcome from courses due to no understanding there or not being able to do courses whilst you did previous jobs and so on.

A biggie about what has gone on over the last decade - and I've seen others mention it - a lots happened, the whole world still is pretty distorted and wanting to not change, nevermind acknowledge the full extent of what it has done to some of us in lifelong choices.

I think those who got this younger particularly fall into this because I guess when older if you know how your body should feel then get it 'you know', and you are more conscious of pensions and early retirements etc.

Those of us who perhaps started off on back foots. Might not even have got diagnoses or acceptance if we mentioned the issues and were just called various versions of weirdo, incapable, not behaving. For that to move onto a diagnosis that told us that and gave us advice they wouldn't give to anyone around us to made it impossible to follow.

I feel there is a significant story that needs to be told of just how the disinformation has woven its merry hell to stitch up every decision path of some demographic's lives. How much more extensive it has been than others with other health conditions who got information lifetime wise so could know how their illness might progress and have regular check-ins that told them where they were allowing them to plan. Who didn't have everyone around them trying to undermine access even if you did have a chance of it due to the nonsense 'the illness is about stopping trying to fight it' nonsense. It's heartbreaking when you think about it all.

I feel this issue needs to be forefront on discussions going on currently officially. The idea services will still be medic or 'assessment' free, and short-term courses - when really people need the prognoses and 'the talks' when these things happen, these devastating health nosedives.

Is it common that other health conditions someone could have so badly never to work again and could have worked all their life til then, had entitlements and then back-up ones and circumstances, particularly the nastiness from misinformaiton, led to the missing that all?

And I worry that those of us who made wrong 'choices' - and I put them in inverted commas because these situations are not made for those with our condition, the battle too big, the suppor too little and the body too weak it's hard to make it fit - well someone needs to ask it at some point.... what do we do. It breaks my heart that others have rewritten my history and ergo 'who I am' to the opposite. It's hard to live with that. On top of the injustice of the functional stuff it isn't OK.

So I feel we do need to tell our story in some way at least if not fight for what happened to us, what we should have had, and what was allowed to be there and how it impacted how we've ended up. Can we get access back to the things that had 'windows' to claim but information or support or culture at that point impact being able to do that? Or at least have those around us getting that we were screwed not 'lazy' because it feels that despite having been the utter opposite compared to norms - who got easier times of all the above with a healthy body (and kindness and understanding) - all my life has just been that phrase in return for overworking my body and it not being perfect/enough/ending well.

What can we do? and can someone help me to put together probably a few different, but serious threads where we collect what needs to be on that whiteboard to avoid naff services advising us to just 'manage ourselves' in place of the basic most important things. But also can start to tease out what happened to some of us, who we are, and why/trace it back to the stigma or lack of correct guideline/literature or what not. It's a biggie but it feels the right time. And it's a lot to unpick but weighs heavy and just I feels needs to be told.