When people find out I’m an anarchist, a question I frequently get is “how would people with chronic illnesses like diabetes access treatment under anarchism?”
There are a lot of unspoken assumptions packed into that question that I thought I’d explore a bit.
The first is, of course, that people with chronic illnesses can access treatment in the context of capitalist modernity. Not everyone can! Many people in the world of states and capital suffer and die from lack of access to treatment.
Not because the treatment is unavailable, but because access is mediated through capitalist gatekeeping. People, today, right now, in allegedly rich countries, die because they cannot afford insulin. For them, the question of “but how would we access insulin under anarchism” is moot. Many others access it only at the cost of medical debt and other forms of indenture.
Six year ago, I returned to NIH in Bethesda, where I started my career as a science writer, to be a patient in an ambitious study to understand the patho-biology of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The study included 30+ researchers & many substudies, and was essentially a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick). 1/24
Question for #blind people, particularly those who use both a #Braille display and a laptop, if you're sitting at a desk and need to use both, how do you arrange them so using them both doesn’t kill your back? For context, I don’t have a desk since I usually work from bed, but sitting with my legs straight out in front of me hunched over my display and keyboard was hurting my legs and back, so I got two TV trays and an office chair and I’m using those. I have my Braille display and laptop both on one TV tray in front of me, with the Braille display in front of the laptop, but this means that if I need to use the laptop, I have to lean over my Braille display, so I’m still hurting my back. I’m working on my #BrailleTranscription course, so I have to use the laptop to type the exercises and drills. Also, I’m on a rug, so rolling the office chair between two TV trays isn’t an option. Is there anything I can do here to not hurt my back so much? #chronicIllness#chronicPain @mastoblind@main
Doc: Are you sure? You look young. Maybe it was your appendix?
Me: I know the difference between my appendix and my WOMB.
Doc: Orders pregnancy test anyways
We really need to discuss how AFAB patients get treated by many doctors. If you need to do a pregnancy test on everyone as a matter of course - then just do the test. But don’t waste time arguing with me about whether I know the difference between an appendix and my LITERAL womb when I’m having a life threatening cardiac emergency.
TW: Mild discussion of chronic health issues and grief.
I really miss being able to play MMO's, especially #WoW. I cannot cognitively keep up with worlds like that anymore and it makes me sads.
Everything feels like a job, a chore, a huge undertaking. When I can only spend about an hour a day playing a game (thanks, health)... that's just not it for me anymore. No more long play sessions.
Does anyone else out there feel this sort of grief related to #Illness?
"When people think about #disability or #chronicillness, they tend to do so in a very black and white sort of way: Either you are completely #disabled, or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.
Since Black Friday is here, I wanted to share some of the items available in my shop 😊
I design and make cute stickers, enamel pins and notepads. My goal is to make people who felt like the “misfit” kid seen and mainstream the marginalised. 🌈🥰
This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.
Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.
making an #introduction for the new people who are looking for people to follow!
i am a #nonbinary#transguy from #germany, i am #disabled with #mecfs, #eds, #mcas & co and can infodump you about DIY #chronicIllness management for hours on end, i use a #wheelchair, i have messed up sleep, i am also very neurodivergent and mentally messed up but i have moved away from identifying myself with psychiatric diagnoses.
i post a lot about my life and random shit, i am in the process of #writing some books (in german, sorry), i am also learning #french and #dutch and i like #linguistics and basically i am one little ball of #fatigue and special interests.
One of my biggest interpersonal struggles is people not understanding, when I am functioning at 15%, that isn't just how much energy I have or how much stuff I can get done.
It means I am also struggling with 15% patience, 15% graciousness, 15% mental flexibility...
Sometimes... I wonder... as an adult without children... what it's like for my mom every time I have to tell her I also have the same (negative) genetic condition she has... or her sister has... or her mom had, etc.
Like... I would feel SO bad passing any of my crappy medical issues down to a kid (one of the reasons I'm childless).
Have you ever had to go through this? Have you ever thought about this? Or is my Autism just going for a ride... lol
I completely understand why some #neurodivergent people, - #autistic people in particular - are uncomfortable with the word disabled. The medicalisation of minority neurotypes is hugely problematic & is used to fuel oppression.
But as someone who is neurodivergent and also #disabled by #ChronicIllness the “ew we’re 𝒏𝒐𝒕 disabled” rhetoric feels like a real slap in the face. Really feels like I’m not wanted anywhere.
My Lexapro is working and it... works. Which I'm finding is actually😔
My biggest coping mechanism for #autism is (what I am now finding out is) an unusually good memory. So, while the autism makes me very aware of everything I am doing (and what others do), I can remember every related interaction and prepare different reactions.
The obsession over reacting properly means I can recall, almost verbatim, everything that happens.
The Lexapro is intended to stop exhausting me and destroying my #MentalHealth. And it works.
But now I can't think properly. I can't remember every interaction, every word, every thought. I can't plan out how others will react, how I can respond appropriately.
I'm getting surprised by interactions and forgetting things. And while my wife tells me this is how normal people think and remember, this feels intolerable. Like my brain is broken.
How do I ready myself? I was going to eat/drink more for the past week but got a long migraine and health problems bc of hot humid weather. So I drank more but eating more didn’t work out much.
I also have low blood volume so that makes it even worse. I’m generally wrecked for at least a few days after a blood draw.
I am looking to hire a social worker or equivalent in Ontario for 5-10hrs/mo. Eastern ON area, but can likely do remote.
Need someone hip with the complex bureaucracy of supports. But more importantly someone innovative, wanting to explore and foster change and create new things - because existing supports are shite.
Salutations and benedictions to my Swallowing Pills Is Difficult brethren, if you are out there! I have been taking the same utterly minuscule tablet every day since 2017 and once again had to spend a whole minute trying to get it down and choked twice in the process.
Meanwhile, all you lucky bastards who don't need to take daily oral medications and/or have an easy time swallowing them? Good day to you 😒
Wanna confirm your worst fears? Here's a reddit thread of residents showing unbelievable contempt for patients w certain diagnoses: https://reddit.com/r/Residency/s/AbReVlD4FO
Hey allies:
This is what your loved ones have to deal with. Go w them to doc appts to help advocate!