hey the thing that sucks about getting long covid isn’t Becoming Disabled.
the thing that sucks is acquiring a disability with the baggage of decades of systemic discreditation with which you are more likely to be told Nothing Is Wrong than to be offered appropriate support.
like it should really tell you something how many public health types are still neglecting to mention the relatively significant risk of long covid.
they either don’t think it’s real or don’t think it’s a public health problem, but either way they are perpetuating the problem.
(ps this thread is about language choices as we discuss widespread implications of the pandemic and not crip grief 💗)
also certainly all of this! discreditation does not occur randomly or aimlessly.
everything about our current med system is built on top of a system that emerged to serve comfort & financial interests of wealthy white cis men. the violent implications of this touch everything.
like as you’re watching the pandemic unfold, and you are seeing a lot of people you previously respected choose comfort and / or financial interests over what The Science is telling us about how to respond to covid, I invite you to really reflect on where else that bias shows up.
establishing a narrative that Nothing Is Wrong is part of a longer term effort to deny benefits to disabled people who can’t clearly document the genesis of their illness, by the way, which will impact multiply marginalized people the most.
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fun fact: one of the biggest ways ableism against people with complex, chronic & contested illness (like long covid, unfortunately) shows up in media is implications that the illness isn’t real.
many folks are told they have a character flaw to Overcome, when it’s a disability.
like if you see a character who is portrayed as Too Into Goop, what you are actually seeing is someone who’s been deeply failed by the entire medical system through the eyes of somebody who doesn’t know a thing about what undiagnosed & desperately self-managed illness looks like.
(I know goop is trash. one of the reasons it is trash is it preys specifically upon people who have been failed by the medical system.)
I continue to fucking hate living through a time when people with post-viral illness must simultaneously run awareness campaigns about how terrible their lives are (in the name of prevention) while simultaneously assuring people with new post-viral illness that it gets better.
(ps if you’re one of those newly sick people still trying to get your bearings, I wrote you this letter. and lots and lots of people agreed to record themselves reading it, so you can watch or read. 💗)
ok one more thing: whenever I am silly enough to wade into alt med discourse, it is so clear to me that we do not have a common definition for what qualifies as "alternative" other than that a lot of people use the term to discredit people who are already struggling.
is acupuncture "alternative" now it's covered by some insurance? are elimination diets "alternative" if they're never covered? are vitamins & supplements "alternative" if they've been extensively studied?
who benefits by casting something as "alternative"? "alternative" to what?
anyway I hate exploitative opportunistic quacks as much as the next chronically ill person, but you'll find them wherever there are desperate people. lots of them are selling snake oil and also lots of them are overprescribing otherwise effective drugs to every desperate patient.
hi if you feel like it's more important to blanket condemn everything under the umbrella of "alternative medicine" than it is for people with un/under-treated illness to find whatever tools will help them get through the day, please just go ahead and unfollow me now.
for a lot of people the alternative to "alternative medicine" is literally nothing.
also, a lot of "alternative medicine" is well studied.
yes there is a lot of misinfo out there. there is also a lot of abuse & neglect within the system.
get on board w harm reduction or gtfo.
“alternative medicine is dangerous, you should trust your doctor!”
1. my doctor recommends safe home remedies as first line interventions all the time.
2. a lot of doctors literally refuse to diagnose hEDS/HSD specifically *because* they have no treatments to offer. so.
I'm actually not sure if modern medicine deserves any credit for keeping me alive? I have had a lot of encounters with medicine but they have almost universally been unhelpful.
maybe antibiotics, I suppose, but no specific scary infection.
(re: a question tweet floating around)
over the last five years, my spouse deserves most of the credit for keeping me alive while my doctors deserve no credit at all.
cursed alchemy of survival?
I was sick a lot as a kid, just not with anything treatable (though some are vaccine preventable but I got infected too early or too young).
(aka measles, mumps, mono, multiple cases of chicken pox)