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Brianne Benness

@bennessb

Feb 17

I know I talk a lot about the legacy of hysteria & neurasthenia, but I want to be super clear that I don’t boost stuff that equates FND w hysteria.

we have a huge problem where many docs treat *most* clinical dx’es as polite ways to diagnose hysteria, no single dx holds blame.

for just about every proposed illness pathology that you roll your eyes at because it is so clearly not what’s been happening in your personal body, there’s somebody who’s like “oh shit, that’s exactly what’s happening for me!”

including FND.

instead of telling other patients that they’re interpreting their own experiences incorrectly (which is what doctors do to us), we need to start by assuming that maybe we are having different embodied experiences? so of course different diagnostic combos make sense?

Read 8 tweets

Brianne Benness

@bennessb

Feb 16

https://twitter.com/bennessb/status/1493911679545053191

tbh the myth that docs explicitly tell you you’ve become officially disabled is another reason so many newly dx’ed sick folks don’t id as disabled!

literally SO MANY people think “yeah I have a chronic condition but my doc would’ve told me if I was DISABLED now, right?” (wrong)

https://twitter.com/bennessb/status/1493911679545053191

a lot of docs are incentivized to behave as if their job is to prevent you from id’ing as “disabled & eligible for accommodations & benefits.”

Insurance-Endorsed Meds or Misattributing Everything To Psych needn’t be the *only* first-line interventions available.

like… imagine if our 1st steps in managing new symptoms involved immediately accommodating rest & recovery in workplace & education environments, because we *know* it can take years or decades to get chronic conditions dx’ed so dx is a bad proxy for disability onset.

Read 4 tweets

Brianne Benness

@bennessb

Feb 16

it was a mistake to search twitter to find out why there are people mad about the idea that other people can choose to self-identify as disabled. a huge number of people self-id.

good reminder that exclusionary bs creates the conditions for more exclusively bs tho.

I know that the first problem is that a lot of people have a really narrow (and inaccurate) definition of disability.

but then also presumably people think that when you are diagnosed with a qualifying disabling condition then a doctor tells you you’re Officially Disabled. (no.)

you’re just sitting there in your little hospital robe, waiting for the doc to come in with news.

and then suddenly they waltz in w a ceremonial cane & tap you gently on each shoulder as you weep for your lost future before they say “the worst has happened, you’re now DISABLED.”

Read 4 tweets

Brianne Benness

@bennessb

Feb 15

I understand why people are worried about casual illness language being “appropriated” but I don’t understand why so many people assume that anybody who is undiagnosed but using terms like “spoons” or “brain fog” is non-disabled.

diagnosed folks are the tip of the iceberg.

you literally cannot tell whether somebody is disabled or not by looking at them.

we know this when we talk about ourselves but magically forget when it comes to people using these terms w/o explicitly connecting them to an underlying diagnosis.

this is pretty hypocritical tbh.

(also plz note that I explicitly said casual illness language, I’m not talking about clinically defined terminology. I think precision is important for clinical terminology & also I still think we need to make sure undiagnosed people have access to accurate & appropriate terms.)

Read 15 tweets

Brianne Benness

@bennessb

Feb 14

I’ve seen so many newly sick people who are worried that the general public isn’t taking chronic post-viral illness seriously because of the language we use to describe it.

I just really want to assure people that language isn’t the problem. willful disbelief is the problem.

if you talk about fatigue, some people will say “we all get tired sometimes.”

if you talk about literally losing consciousness after trying to sit up, some people will say “don’t be so dramatic.”

we’re not describing it wrong, they just don’t want to hear about it.

(also to be clear, I’m not saying that the language we use doesn’t matter. I’m generally pretty committed to building better language so we can talk about our experiences *with each other *.

other people have already decided whether or not to believe us before we start talking.)

Read 7 tweets

Brianne Benness

@bennessb

Feb 12

https://twitter.com/bennessb/status/1491550444036014080

I think a lot of people try to understand what energy-limiting chronic illness is like by imagining the most tired they’ve ever been, and it’s just not an accurate proxy.

the very act of imagining may take infinitely more energy than a lot of people can dredge up while sick.

https://twitter.com/bennessb/status/1491550444036014080

I know simulations don’t teach what we want them to, but here’s what my crash simulation would look like:

lie down flat, no pillow because elevating your head hurts. no thinking at all, because thinking hurts. no tv or books or screens (painful). any standing risks collapsing.

and more important, you have to stay in prone isolation until you don’t collapse upon standing anymore.

but every time you collapse by trying to stand too early, you prolong the crash and make it worse! so you have to be very confident you won’t collapse whenever you try.

Read 7 tweets

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