Ed has posted this on Twitter, which shows how valuable good articles like this one can be.
"Whenever I write about long-covid or ME, I get waves of emails from chronically ill folk who feel seen/heard. But with this piece, I'm *also* hearing from healthy people saying they finally get what their loved ones are going through. Which feels amazing."
"I'd always hoped these pieces could function in this way, that they'd act as an empathy bridge--a tool that long-haulers could use to open up conversations with dismissive, skeptical, or well-intentioned-but-confused people in their circles."
I've been thinking recently to myself about how the fundamental, underlying 'framing' of the condition is what needs to be nailed - ie people thinking 'back to' principles of 'chronic fatigue' as a basis has always been an unhelpful way of picturing it and certainly doesn't scale to either the different severities or how they operate e.g. someone mild might be able to seem to live at a normal pace but then crash whereas the 'chronic fatigue' idea gives some mental picture to me that others think how tired someone seems in front of them and how fast they move in that moment
is the disability.
But I'm torn between it being defined as 'energy-limiting'
versus that need to underline that it is illness and horrible debilitation. Which then when you think about debilitation and what underlies the 'level of disability' full-circles the paradigm needed back to 'energy-limiting' because there seems to be a line at around the bottom of severe where what you have is
less than what you need just to lie in bed unable to move forevermore, which people seem to be unable to imagine (and begin their scale at some level where of course you can get to the loo and eat and it is just about trips out and exercise which is so far off the mark).
This does feel like a key thing to nail because its current conceptualisation is so misleading and off-beat and I think part of the reason why if someone finally reads some of these analogies it must be a massive penny-drop of 'gosh I've been blinkered into totally the wrong territory'.
I do wonder as well whether an issue is the term fatigue, the bad definition of it not having a sub-term - if what we experience when we can't literally support out own arms isn't actually also 'fatiguability' or 'fatiguability-related' rather than fatigue [if not then it feels to me that is based merely on the technicality of it not being the
arm muscles but the
central system that feeds them] or is it some contradiction in defintiion where it is 'fatigability'
until you've then overdone it at which point having 'exhausted' the muscle or whatever is
apparently defined the same as 'the feeling of being tired' that can be meleded up witht he types where you just need a cup of coffee or a jog on the spot and it goes away forever with no long term effects.
We live under vile tropes others seem to think are acceptable to utter like 'lie in bed all day' said with a wry smile as a substitute for those who are so ill they are stuck trapped unable to be anything but horizontal for hours (days, weeks, years for some) and the vulnerability and awfulness of that.
And we have horrible symptoms and pain that mean the opposite [of such people's insinuated 'must be nice to get so much rest/not be busy'], so when that person is having a lovely night's sleep we might be in raging PEM with our legs raised and revving in huge pain whilst all our other joints ache and are hunting for cool sheet and at the same time we need the loo every 30mins despite being too exhsuated and debilitated to not be horizontal. Not to mention the migraine like symptoms and all the rest feeling genuinely more unwell than they probably ever felt with any illness they've ever had.
Energy-limiting it certainly is, and needs to be understood much better from a disability perspective because [there seems a current trend at the moment for norms to engage themselves in 'ennui' and 'busy-making/I'm so busy habit'] wasting someone's little bit of energy they have for a task is a callous habit some are doing, and they justify it to themselves by saying if they had the energy set aside to do that in the first place then they weren't disabled then don't wait around for the aftermath of them then being debilitated for days and not having got that essential task done.
EDIT: that 'not so sneaky' tactic is to me the equivalent of kicking a disabled person's cane out from under them when others aren't watching then telling onlookers 'whoops they are losing it and need another lie down', just to give themselves some weird competitive personal boost (as if it makes them a better person to have 'won' over someone else, something I've never understood but witnessed in too many).
The BPS'ers misogynist-y 'fatigue in their head --> get tired --> are 'distressed' misognyinist, game-playing tropes (not to be forgotten women can be some of the worst misogyinists to other women) and the sadly warped-CBT/toxic positivity 'I don't/can't care about others' attitude (and then spout 'why do they care what others
think' when they've actually
done or
not done things based on it) has provided a perfect cover for pretending this is both acceptable and the problem of the disabled person simply by engaging 'ad populus' ergo 'its OK because I've found lots of horrible others who also have the same stinky attitude so we must be the normal ones' ... in my opinion.
It has really managed to hit home when they engage the mental picture of treating us like over-tired toddlers rather than disabled people who've just had a cane kicked out from under us, rude tropes and then looked at on the floor obviously disabled by someone who deluded tells themselves they 'can't see it' and can't make themselves care' and so convert a fair reaction of 'what's wrong with you' into fake assertions of that person must be 'distressed' rather than rightfully telling you that you can't do that in order to carry on dismissing reality from themselves. So yes, the 'tiredness' and 'fatigue' and 'chronic fatigue' TOY needs to go and be taken away from all of this.
