Brianne Benness Profile picture
Jan 31 7 tweets 2 min read
just reminded by another convo going on that maybe one reason people w EDS might be Reacting Strongly to patterns of [advocates with institutional power blocking indiscriminately over clarifying questions] is because we have seen how this played out with L*ra Bl*om.
like if you don’t want people to be mad at you for excluding them from your advocacy work after you’ve intentionally built a professional brand around representing those people, consider not self-identifying as a representative to begin with?
(yes I’m def being flippant because I recognize this is not an isolated two-person conundrum.)
(and also in my first tweet I don’t mean to suggest that only ppl w EDS are having this conversation rn. just that some of us in the conversation may also remember these other conversations.)
in 2019 when people were talking about this a lot more I didn’t really know enough about EDS to parse all the criticism, and now in 2022 my biggest TEDS criticism is that they have done fuck all to support people with EDS (and HSD!!) through the pandemic. and like, grossly.

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More from @bennessb

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
Jan 31
my honest twitter bio would say like: come for the affirming tweets about systemic disbelief of people with chronic illness, stay for the perplexing tweets about corporal haunting with extremely inconsistent world building.
I’ve barely tweeted about my spine worm in months, is that disrespectful?
revered spine worm, your recent integrity has not gone unnoticed and I offer you my deepest gratitude for the expanded orthostatic tolerance this has been bestowed upon me.
Read 4 tweets
Jan 30
ooookaaaaaay today we are watching them new K Bell mystery show with the long name.
well I don’t know how to describe the tone of this show but I can tell you it reminds me that I’m happy not to live in suburbia at this time.
well anyway just starting ep 2 and there are some real allusions to Gaslight.

secret attic rummaging is the real gaslighting! (like, canonically? is that the right word here?)
Read 7 tweets

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