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Brianne Benness

@bennessb

28 Dec

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!

flawless plan! what could go wrong!

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Brianne Benness

@bennessb

27 Dec

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.

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Brianne Benness

@bennessb

24 Dec

https://twitter.com/bennessb/status/1474367232524304392

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.

https://twitter.com/bennessb/status/1474367232524304392

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.)

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Brianne Benness

@bennessb

24 Dec

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 💗)

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Brianne Benness

@bennessb

19 Dec

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. 💗)

noendinsight.co/dear-problem-p…

(spoilers from the letter:)

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Brianne Benness

@bennessb

18 Oct

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.

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