Hey #LongCovid folks,

If you're feeling really isolated and like no one understands what it's like to get an infection and have your body change forever

I just want to humbly suggest that disabled people (especially chronically ill ones) are here for you
I have an assortment of disabilities, but one you might find relatable I'd that when I was about 25 I spent a week or so feeling awful

And then I could barely stand up, and I kept falling over
It took me three years to get diagnosed with dysautonomia, in my case most likely POTS

And a lot of what I do on Twitter is about helping support people who have some mystery illness, especially people medicine has basically abandoned
I would also just like to humbly point out that we live in a really ableist society, and it's a lifetime's work to keep unlearning all those assumptions about what type of bodies are "normal"
It took me about a decade of dealing with pretty severe symptoms before I felt comfortable calling myself disabled, even though I was literally receiving disability benefits
You don't have to identify any particular way

But just know that for many of us, disabled is not a bad word. And many prefer it to euphemisms like "handicapable"
When I first found a community of other disabled people, I was really eager to help

Which I mostly did by giving a lot of unsolicited health advice

Don't be me, and wait for people to ask or at least get permission first
If you've talked about your long covid symptoms with friends and family, probably you have already noticed everyone has unsolicited health advice: essential oils, or alkaline water, or whatever

It gets old, right? So again, learn from my mistakes
I don't know if you already follow any of Autism Twitter, but maybe you have noticed that many of us are super upset with Sia right now for her new film that is full of harmful tropes about non-speaking Autistic people?
In case you have no idea what I'm talking about, here's an overview

Anyway, Sia has Ehlers Danlos Syndrome, so theoretically she should know better?

But like I said, we're living in an ableist society and it takes work to start unlearning that stuff

(What Sia is doing is called lateral ableism, btw)
Anyway, I am just going to link some resources for learning more about disability and in particular disability justice

Im trying to include a variety of formats, because I know when you're tired or have a headache it can affect how you best process information
The Black Disabled Woman Syllabus by Vilissa Thompson

rampyourvoice.com/black-disabled…
Disability Visibility, an anthology edited by @SFdirewolf (note, I have an essay in this)

There is also a free plain language summary available after the link, as well as links to purchase the book or audiobook

disabilityvisibilityproject.com/book/
No End in Sight is a podcast which focuses more on chronic illnesses

It's run by @bennessb, who also created the tag #NEISVoid which is super helpful
noendinsight.co
@TheStayingInn is a virtual space for disabled people to hang out during the pandemic
@Mae_DayJ organizes @ChronicLoaf_ , which are virtual watch parties for disabled people to chat and...ok you know what watch parties are
@DawnMGibson organizes #SpoonieChat, which is a Twitter chat mostly for chronic illness things
#CripTheVote is another Twitter chat about disability and politics
Also there's so many more awesome disabled people creating great things, but I really need to go take some meds and try to sort out my latest bout of temperature dysregulation so I'm going to end the thread here
Ok I lied one more link

me-pedia.org
Also you don't have to pass some sort of secret test to be involved in disability spaces

If your symptoms improve later, hopefully you'll at least know more about accessibility or healthcare reforms disabled people are lobbying for in various countries

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More from @UntoNuggan

22 Nov
Definitely. I have a thing where...I don't know how to describe it except "words are hard"

And like, technically I can usually force myself to speak in those situations?

But I often don't say what I actually want to say, and also then I can't really talk for a day
Or like often even when words are hard, I can talk to my cats because they care more about tone of voice than what I'm actually saying

(Tho I have called a cat by the other cat's nickname in this state before, and the cat noticed but forgave me.)
I end up feeling really rude, because sometimes family members see me talking to the cats and assume I have hit the point where I can have a conversation with other humans

And I can fake it while we're relying on social scripts (how are you? etc)
Read 8 tweets
21 Nov
Time for the latest dispatch about anxious cat Chance and my mobility aids, this time featuring my new drive wheelchair and delightful wheelchair cushion

(Side note, I got the gift notes, they're so sweet tysm.)
Anyway I have been easing in to using my wheelchair because I don't want to overdo it and make my shoulders super angry

Plus I still have lingering not-COVID and so I'm trying to be responsible and not wheel around my neighborhood
Anyway I wheeled myself to my mom's room to chat with her about something, and Chance followed me and went directly to the other cat's food bowl

So I wheel towards him thinking he will stop because new object, but he just ate faster
Read 13 tweets
21 Nov
[Dietary intolerances]

Before I knew I had #MCAS, I did not think I would ever be celebrating a day in which I got to eat something with vinegar but here we are

(It's rice vinegar, and my body is ok as long as I don't have it every day.)

Vinegar is so delicious 😭
[Dietary restrictions]

Also PSA if you really want to make a salad dressing but are avoiding/minimizing vinegar and citrus

I have had luck with either tahini dressing (YMMV, sesame is a no for some obviously) or making a bastardized citronette with 100% cranberry juice
[Dietary restrictions]

I think 100% pomegranate juice would also work

I've tried apple juice, which is obviously much less acidic, and it didn't really emulsify but it was still pretty delicious
Read 8 tweets
20 Nov
I think it's funny (in a lolsob way) how Sia wants Autistic people to watch that movie before judging it

If Sia had been paying attention to Autistic people, she would have realized that the publishers of Finding S.A.M. just tried that exact approach
So when the publisher told Autistic people we couldn't judge unless we read the book, some very wonderful Autistic people did and posted a bunch of excerpts with criticisms

Eventually, the book got pulled (it was really really bad, so this is a good thing)
Plus, it's not like people are especially creative when they make really terrible depictions of Autistic people in film, books, etc

The idea that Autistic people can't recognize those patterns and harmful tropes is honestly kind of insulting
Read 5 tweets
20 Nov
[Inpatient psych]

I think a lot about how this one psych hospital I went to had just really disgusting showers.

I was there several times over a period of several years. People always complained about the showers. Staff always blamed patients for not cleaning up.
[Inpatient psych]

And like, idk maybe if a hospital has consistently had a problem with disgusting showers for years, whereas patients are only there for a short time...

Maybe the hospital is the reason the showers are so gross 🤔
[Medical BS]

And the gross bathrooms are just one small example

But I think it's really representative of just all the times there's actually a structural issue or whatever, and medical professionals blame individual patients for making bad decisions or whatever
Read 4 tweets
20 Nov
Watching The Crown because I have no energy and need some distracting trash, and thinking about how apparently Charles called Camilla every day to talk and like

Honestly based on his dialogue in the show (and cough excerpts from the newspapers cough), it just sounds exhausting
Listen to the rich privileged man complain about his marriage, how much it sucks to be so rich and privileged, and maybe a side of like... tampax related phone sex?

I do not see the appeal
For awhile I was trying to figure out how Camilla even had the time to talk to Charles so much, since she has like. A life and children etc

But then I remembered she was also rich and privileged, and had servants for that sort of thing
Read 10 tweets

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