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?
there's just this pervasive attitude (in the world & also media) that it is always better to have a perceived healthy body at literally any financial / temporal / emotional cost, and it's a big tell that you have an ableist writer's room.

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More from @bennessb

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
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
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)
Read 7 tweets
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
18 Feb
I am so incredibly angry that it never occurred to me to think this way until I didn't have a choice about it.
The shit we get told for needing a lot of sick days is inexcusable.
I always thought the point of taking sick days was to avoid needing sick days in the future. which is a very specific kind of chronic illness logic, and I don't know how widespread it is.
Read 4 tweets
28 Nov 20
Really interesting how many people interpreted this as mindfulness bashing.

This was about how I (and many other people) literally do not have the tools to interpret the signals our bodies are sending us until we've done years of research.

See also, my tweet about cipher keys.
[med trauma]

For most of my life, other people *insisted* that my symptoms must have a pattern if I just paid closer attention.

Most people acted as if there was an effort & attention gap rather than a knowledge gap.

This often took the form of literal gaslighting.
The tool I needed to "tune into my body" in my case was a 24/7 heart rate monitor. Nobody suggested that.

I didn't know that was data that could help me and the tools didn't exist for consumers yet anyway.
Read 5 tweets

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