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Brianne Benness Profile picture
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3 Aug, 4 tweets, 1 min read
some of the replies lead me to believe that a lot of people think long haulers are getting way more help than they are actually getting.

media coverage ≠ competent & accessible medical care.

graded exercise therapy & CBT ≠ competent medical care.
like I absolutely hate it here in this part of the multiverse sometimes, but dedicated long covid clinics that only offer GET & CBT are *worse* than no clinics at all.
long haulers need money so they can rest & pursue competent personalized care, they don't need to get sucked into a decades-long violent campaign to somaticize post-viral illness.
we all need the same thing: a complete overhaul of the fabric of society, essentially.

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More from @bennessb

Brianne Benness Profile picture
1 Aug
okaaaaay starting Shrill season 3
I appreciate the way this show and Special take shots at online publishing.

also all tv currently makes me nostalgic for seeing multiple people every day? not to defend offices, which I would never do.
"ok Annie given your signature emotional acrobatics you got what you wanted, our undivided attention" 💀
Read 5 tweets
Brianne Benness Profile picture
7 Jun
I've been watching a lot of supernatural tv lately (obviously) and I am so intrigued by plotlines in which very sick people ask to be turned into [vampires/zombies/etc] to be free from their illness.

but then they get very sick if they don't have [blood/brains/etc]. 🤔
just like, writers, stop doing this.

being completely dependent on a difficult-to-access substance in order to keep your body on an even keel is how many illnesses work? better writing could explore this trade-off of one disability for another?
like my illness basically requires me to drink over a gallon of salty water a day if I want to be upright. this is inconvenient for a variety of reasons.

I suspect that having the same relationship with like human blood would be... not necessarily better?
Read 4 tweets
Brianne Benness Profile picture
24 May
not for the first time, I have Some Notes about cervical spine design
I try not to think about my cervical spine at all*, but whenever I do think about it I imagine an extremely spiky and unstable tunnel in which my spine worm is fighting to thrive.

*because if I think about it in any kind of detail I trigger a vasovagal episode. haunted, etc.
also at this point I assume the vasovagal response to *thinking about spinal anatomy* is a feature, not a bug.

you know, like of course the perilous tunnel that all life depends on has an unsettling security system to prevent me even *thinking* about it. of course it does.
Read 5 tweets
Brianne Benness Profile picture
19 Mar
This is definitely a must-read for all disability & healthcare advocates!

(especially if you’ve been comparing long covid to polio without acknowledging the decades of dismissal faced by ME patients & advocates who could see this mass gaslighting coming)

vice.com/en/article/qjp… Screenshot of text that reads “The answer is simple: Our m
the scream you just heard was me, reading this:

“The average time to an MUS diagnosis for a patient presenting with new symptoms was 4 minutes & 25 seconds—and the median time, which is more representative because it eliminates the effect of outliers, was 1 minute & 47 seconds.”
💯💯💯

“The failure of that system forces patients with complex medical conditions into the welcoming arms of charlatans whose main virtue is the time they spend listening.”
Read 4 tweets
Brianne Benness Profile picture
14 Mar
do you ever think about how it's easy to screen yourself for POTS, and yet somehow an unfathomable number of doctors won't recognize the diagnosis unless you've been literally tortured on a tilt table and then they reveal to you that your main treatment options are SALT & WATER?!
(yes, with many caveats about how not all dysautonomia is POTS and also that there are some prescription treatment options)
ps
Read 7 tweets
Brianne Benness Profile picture
26 Feb
[rant!]

everything about this last year has been so incredibly hard for so many people, including those of us with underdiagnosed & undertreated chronic illness.

and somehow it's like each new phase unlocks a chorus of new & distinct ableist dog whistles in media?
like at the beginning there was the thing where everyone acted like we were exaggerating the threat we faced. ugh.

and we've been missing from all risk assessments & plans, of course, because in all official sense we are Presumed Healthy, Despite Evidence To The Contrary. UGH.
and anyway I'm just thinking about how sometimes in order to survive with chronic illness you just... keep accepting that you've been let down by all these different people who were supposed to help you when you're sick. doctors & friends & family & colleagues.
Read 5 tweets

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