Brianne Benness Profile picture
Feb 12 7 tweets 2 min read
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.
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.
[death, systemic neglect]

this can last for months and obviously competes with basic survival needs, but it turns out it is literally impossible to care for your own survival needs under these circumstances.

people with these conditions who don’t have support don’t survive.
[death, systemic neglect]

it’s so messed up to keep having these conversations…

me: yeah I was really sick and I would have died without [whatever support I had]

person: 🙄 don’t be so dramatic, your illness wasn’t going to kill you.

.

I know, that’s not what I said.
anyway for a really long time I was undiagnosed & some people would treat me like I had this major flaw where my will to live wasn’t strong enough & I just want to say for the record that that’s an incredibly shitty way to treat anybody.

now I’m like oh, my brain leaks, got it.
and it’s super important to say here that the fact I’ve recovered some function again after the major crashes I’ve had is a fucking gift.

people spend years, decades in a crash state. that’s why you don’t hear about it. the impairment literally prevents folks from describing it.

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More from @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
Feb 3
weird how doctors who will condemn and relinquish care for “non-compliant” patients suddenly have compassion about how constant 100% compliance can be exhausting and borderline impossible now that they’re talking about abled compliance w guidelines to protect disabled people.
it’s almost like the only consistent position between these two takes is that you don’t think disabled people deserve compassion, safety, or humanity?
have we tried chiding healthy people that they just aren’t trying hard enough to end the pandemic? because, you know?
Read 4 tweets
Feb 3
I just really truly cannot wrap my mind around this strategy of letting [everyone who imagines themselves to be low risk] get covid over and over until everybody left is high risk for covid complications *because* of their previous covid complications?
it’s been two years! there is absolutely no reason to think that we can indefinitely ignore long covid without any consequences!

(tho history gives us plenty of reason to expect people to keep ignoring it, the consequences are still happening in plain sight.)
like honestly saying “covid can’t get me if I get covid first!” is not a public health strategy.
Read 4 tweets
Feb 2
my biggest pacing strategy* is to devote yourself to finding the absolute lowest energy way to do any task you’d like to do regularly, and then to do the task that way every single time instead of wasting precious energy trying to decide how much to accommodate yourself each day.
*with full recognition that:
- sometimes fatigue is so intense that no tasks are possible to do safely, and
- a lot of survival needs can interfere with the basic principles of pacing.

pacing is aspirational & frustrating but also helpful for a lot of people w/o other options.
(also this isn’t like, a proprietary strategy? I’m sure many other people have talked about it? I’ve just been trying to explain pacing a lot lately and that’s how I’ve ended up explaining it?)
Read 11 tweets
Feb 2
are there any non-corporate/non-gig economy options in your region for people who want to participate in the local economy from home? (not necessarily internet-based)

I know there are plenty of places *not* doing this but I’m also wondering what good examples might be out there.
some things that we’ve seen or tried in our area include:
- single farm summer csa with delivery done directly by farm
- winter csa with products from a variety of local farms/sources, also with delivery by farm
- monthly hard cider tasting club from regional cider, ups maybe?
there’s a restaurant in the next town over doing a prix fixe takeout menu with multiple courses and wine all packed for pickup on Valentine’s Day, which is still pretty dang cute although probably $$
Read 5 tweets
Feb 1
in convo with @DownsideUpKat about low-spoon ways to deescalate & acknowledge the kind of twitter conflict that clearly looks like 2 [foggy] brains disagreeing past each other*.

it’s my bedtime so my best idea is “looks like we’ve been sucked into an Inverted Alanis Situation” Quotefancy graphic of an Al...
*you know, like when person b commiserates/agrees with a post from person a, and person a interprets a very different tone (often completely understandably, with all the context cues that twitter can strip) and responds with Much Hostility
anyway I really invite everyone to share better ideas! (or worse ideas, for lolz!)
Read 7 tweets

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