one thing I really want people to understand about the dire warnings about long covid from disabled people is that we want to PREVENT severe long term consequences!
immediately acknowledging post-viral illness & empowering people to rest (ha!) will IMPROVE long-term outcomes.
also like, the likelihood that long covid will never be properly counted so that plausible deniability can be maintained is… very high.
the fact that the numbers are so all over the place is really not an indication that the risk is overblown.
besides, it’s common for people in this stage of post-viral illness to interpret their experiences as Just Part Of Recovery for months. to be getting dizzy in the shower or struggling to pull words from a foggy brain or crashing frm basic survival tasks and assuming it will pass.
and, obviously, with no paid sick leave & no support coming from the government, Assuming It Will Pass is a survival strategy because pushing through and hoping for the best is the only option.
and also, we know that for many people with chronic illness, this is unsustainable.
“unsustainable” as in “recipe for disaster” but I ran out of characters.
(also if you feel uncomfortably seen by my descriptions of stalled recovery wrt shower dizziness and/or brain fogginess and/or running an energy deficit, please check out the resources in my intro thread. 💗)
I am starting the book Nice White Ladies (The Truth about White Supremacy, Our Role in It, and How We Can Help Dismantle It) and I think it is going to be a real ride.
“Some of the most ardent pro-
ponents of the idea that talking about race is divisive that I've encountered are white feminists. It seems that when someone tries to bring up the issue of race and racism within feminism, they are accused of being "toxic"”
“Most historical accounts of the campaign for [white women’s] suffrage whitewash the overt racism, or minimize it as an understandable by-product of that historical period, rather than address it head-on as a cornerstone of white women's political organizing.”
it’s always been dangerous for sick & disabled people to live in a world that sees illness as a personal failing through which to persevere.
watching this mentality predictably come for everyone is just so fucked. par for the course. also, fucked.
like people honestly think that if you’re sick it’s your job to make sure this doesn’t inconvenience anyone else (which is mysteriously not the same as making sure you don’t infect anyone…) and so now that has scaled beyond any plausibility.
like they’re literally telling people not to let illness slow them down but it’s fine if every indoor space is a super spreader environment because we’ll just tell EVERYONE not to let illness slow them down!
one thing I find really really gutting about watching the conversation around long covid and the importance of having a documented positive test is knowing the stories of lyme disease and mold illness and what little difference that documentation actually makes.
like it is absolutely true that there is & will continue to be gatekeeping based on this documentation.
it is not true that documentation is the key to being taken truly seriously or receiving adequate support from people looking for every excuse to withhold support.
and on a personal level, I understand what it’s like to deeply want documentation that says “yes this person is sick, here’s why.”
but it turns out that’s not how healthcare works? you can have the most official paper in the world and still, many people will dismiss it.
I know I say this every time but the geography of this show makes no sense
just very suspicious to be within easy dating distance of Tobermory, Michigan & Quebec. 2/3, sure, but all 3? I am constantly wondering about their commute times.
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.)
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 💗)