So excited to see that The Barbellion Prize is returning soon after a hiatus, I’ve missed it! This UK prize shines alight on talented disabled and chronically ill writers and I’ve discovered some great books through it #bookstodon #writing #Publishing #BarbellionPrize #disability #ChronicIllness @bookstodon @disability
https://www.thebarbellionprize.com
chronicillness
You forget your pills one evening. You feel normal going to bed. But then you have the most intense dream of your life. You wake up shaken, not knowing where you are or WHO you are, or what the hell is happening. You have a horrible headache that lasts all day. Your arms jerk out constantly. Your body is prone to violent shakes. You feel your nervous system vibrating. And you can't just take the pills as then you overdose.
On top of the #ChronicPain that is still there
Trump is adding a 100% tariff to branded pharmaceuticals made outside the US.
This move could be devastating to the disability community.
It will likely drive costs up and create more supply chain issues at a time when we’re already seeing unprecedented medication shortages
Online event hosted by #MEAction
Discussion and Q&A with Brian Buckbee, author of We Should All Be Birds.
Wednesday, October 1st
3 pm Eastern/noon Pacific
More details here:
https://www.meaction.net/event-details/q-a-with-author-brian-buckbee
You must register in advance in order to get the Zoom link for the event.
From my calendar:
"Your body is doing it's best and deserves kindness today" ❤️
I needed this today -- dealing with so many symptoms from ME/CFS and orthostatic intolerance 🛏️
art by @thelatestkate
I would like to start an advocacy and support organization for the condition "we don't know what the fuck you have or remotely understand why any of this is happening and sure as hell have no knowledge of how to make you feel better so we just threw some medical-sounding words together so that we can sound smart to medical administrators and insurers and colleagues but what we do know how to do is condescend and gaslight you because we were born to a rich family and went to school for 12 years." #ChronicIllness #Disability @autistics
This week, while trying to catch up on schoolwork, I've been discovering all the things that put my body into nap mode, and wow, it’s a lot. Pillows, recliner angles, even kicking my feet up can flip the switch from "study" to "sleep."
It's been like running my own ergonomic lab this week, testing what keeps me awake vs. what puts me to sleep.
Turns out I focus way better with my feet supported, but that's tricky when you’re short and most setups aren't built for you. Fully kicking my feet up feels nice… until I wake up two hours later wondering what happened.
I can't tell you how many hours I've lost to nap mode when I was trying to study, but maybe now that won't happen anymore.
#disability #DisabilityLife #ChronicIllness #Fibromyalgia #RheumatoidArthritis #Neurodivergent #Fatigue #Accessibility #StudyStruggles #Ergonomics #ShortPeopleProblems #DisabledAndStudying #NapMode #ActuallyAutistic #Spoonie #CollegeStudent
@disability @autistics @spoonies @chronicillness @accessibility
When I was 21…I was told I was likely infertile and that pregnancy could and probably would kill me. I was denied a tubal ligation and/or hysterectomy because I “might meet a man who wants kids”.
It was a horrifying look at how deep misogyny runs in medicine - and how little women are trusted to know their own bodies and make decisions for their health.
I eventually had the hysterectomy- but only once it became an emergency because I was bleeding to death and they couldn’t stop it. The surgery was more traumatizing and dangerous because I wasn’t afforded the time to adequately prep.
I’m grateful to have survived - and sharing my story in the hopes it helps other women feel less alone. I hope it challenges doctors and healthcare workers to think differently about how they treat women and realize that not ALL of us can become mothers (and not all of us WANT to either).
At the end of the day - a man wouldn’t have had these issues if he wanted a vasectomy. He would have been trusted to know his body. He wouldn’t have been treated like an incubator and I sincerely doubt many men are asked whether they’ve considered that they could meet their “dream woman” and she might be angry about their sterility.
There’s no stigma about the childless cat man.
https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #chronicillness #keepmasksinhealthcare #endometriosis #abortion #womenshealth #reproductiverights #gynecology #misogyny #infertility #childlesscatlady #bodilyautonomy
My heart is so heavy … I lost a friend and mentor yesterday and the disability community lost a leader.
The incomparable Alice Wong passed away.
She inspired me to find my voice. She encouraged me to take up space and embrace my disabled body.
To be visible in a world that seeks to make us invisible.
To be unapologetic about the ways I am different and the things I need to move through this world.
To be a voice for those who don’t have one and to always fight against ableism and eugenics.
I can’t believe she’s gone.
The Disabled Ginger wouldn’t exist without her, and I hope that I can honour her memory through my writing.
Hug your loved ones close.
Remember none of us are guaranteed a tomorrow and may we all be as visible, proud and fierce as Alice was.
Alice Wong helped me accept my disabilities.
She taught me there’s no social justice without disability justice.
She encouraged me to start The Disabled Ginger and was a friend & mentor.
She won’t be forgotten.
Don’t let the bastards grind you down:
https://www.disabledginger.com/p/thank-you-alice-wong
#alicewong #disability #disabilityjustice #chronicillness #ableism #death #grief
Dr Oz isn’t mincing words, he’s stating the regime’s eugenicist goals loud & clear
“Want to drop the cost of healthcare in America? Get healthy”
Where does that leave disabled and chronically ill people?
We can’t “choose” to get healthy.
Just like we didn’t “choose” to be disabled.
They have no plan for healthcare.
Their plan is to leave us behind.
"Why I Can’t Just Meet You for Dinner"
https://substack.com/home/post/p-178293036
A description of PEM (post-exertional malaise) along with some tips for how to explain it to loved ones.
"Post-exertional malaise (PEM for those of us who live with it intimately) is not tiredness. It’s not even exhaustion.
It’s a systemic crash that occurs after physical, cognitive, or emotional exertion that exceeds your body’s brutally reduced energy envelope."
I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’
I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.
I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.
I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.
I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.
When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.
When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.
In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.
My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms
The Barbellion Prize is coming back! This essential literary prize which “celebrates and promotes writing that represents the experience of chronic illness and disability” has been on hiatus but is now relaunching. They need help to raise funds to cover the cost of running the prize and welcome any donations, please spread the word!
“As with disability in general, the literature of disability and chronic illness is too commonly turned away from, leaving non-disabled readers ignorant of the profound difference experienced by many and disallowing a voice to chronically ill and disabled writers. All of the volunteers working to support the prize are motivated by a desire to celebrate difference as represented in literature and to effect positive social change via that representation.”
https://barbellionprize.org/donate/
#bookstodon #reading #books #chronicIllness #Disability #disabled #literature #publishing #InternationalDayOfPersonsWithDisabilities #IDPWD @disability @bookstodon
Edited 281d ago
Share a strategy (any kind) you use to calm yourself down when you are catastrophizing, and why you think it works for you.
#MentalHealth #AuDHD #ADHD #ActuallyAutistic @autistics #ChronicIllness #Disability #AskFedi #Boost4Reach #ChronicPain
UPDATE 4-MAY-2026 18:23 UTC+7
348/560 — $212 left to cover May essentials.
Thank you to everyone who’s contributed so far 🙂↕️
I’m disabled with no healthcare or fixed income, and I need ongoing support to stay afloat.
If you can spare at least $5/month, it would make a real difference.
If you prefer one-off support, that helps just as much.
Please help amplify this so it reaches more people. Thank you, truly.
@posts
@mutualaid @mutualaid@fedigroups.social @disability @autistics
@actuallyadhd
#MutualAid #MutualAidRequest #disabilitymutualaid #MutualAidBoost #disability #press #activism #politics #artist #audhd #cptsd #chronicillness #neurodivergence #ongoingsupport #anarchism #socialmedia #writer #disabledwriter #medicalassistance #disabilityjustice #womensrights #Muslim #islam #Muslimah #muslimwomen #poverty #healthcare #mentalhealth #books #fedi #MayThe4th #maythe4th2026
A 24 year old Indigenous Canadian woman named Heather Winterstein died of sepsis after ER staff dismissed her repeatedly and labeled her as a homeless addict.
There’s an inquest into her death that shows her falling to the floor in the ER and still being ignored.
Bias, bigotry, misogyny and racism can determine the care you receive in the hospital .
I was Heather’s age when I experienced a life threatening complication after my hysterectomy
Like her I was sent home from the ER multiple times
Told I was exaggerating.
Attention seeking
Deemed a trouble maker
On my fourth visit my then boyfriend had to carry me in because I couldn’t even sit up
He had to raise his voice and cause a scene
He said he was refusing to take me home to die, and he firmly believed that’s what would happen
Triage called security who threatened to call police
They would rather arrest him than treat me
Thankfully a doctor heard him yelling and came to look in on me and instantly realized something was wrong
Within hours I was being rushed to a larger hospital for emergency surgery
I had been bleeding internally the entire time and developed a huge infected abscess
Had they treated me earlier, my survival odds would have been much better
Instead I very nearly lost my life and ended up spending a month in the hospital
I was one of the lucky ones
No one’s survival should ever be based on luck, race, money or privilege
Yet more often than not those things determine who lives and who dies
My heart is heavy for Heather and all who knew and loved her
We must do better
We must believe and listen to patients
We must strive to treat everyone equally
#disability #chronicillness #ableism #eugenics #healthcare #bias
From #MEAction -
"ICE Makes Me Sick: Fund Healthcare, Not Violence"
https://www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence
"No more money to ICE. Restore funding for healthcare and independent living support for disabled people."
You can help!
Email your Congress rep using this tool:
https://actionnetwork.org/letters/ice-makes-me-sick/
Read the Take Action Guide for more actions:
co-sponsored by Long Covid Justice
#USPol #ICEout #AbolishICE #MEcfs #LongCovid #ChronicIllness #Disability #Resist
Edited 221d ago
No one talks about the rage that comes with chronic illness and how you have to hide it to remain ‘likeable.’
I burn that to the ground on this account, so cozy on in folks. 🔥 🌶️
Dr Oz says being healthy is a patriotic duty
Worse, he says they spend 70% of Medicare & Medicaid funds on chronic illness & aren’t “getting their money’s worth”
This is the quiet part said out loud.
They don’t want to cure chronic illness, they want us to take the blame.
They don’t want to pay.
They aren’t even being subtle anymore. They’re making lists of people with autism. They deride those who can’t work or serve in the military.
“Wise decisions” would be universal healthcare. Universal basic income. Addressing poverty, food deserts and income inequality.
This isn’t “wise decisions”, it’s eugenics.
#rfkjr #uspoli #fascism #eugenics #disability #ableism #chronicillness
🧵 "Two Households, Both Alike in Indignity: An Interview with Anne Ursu"
https://lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/
Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness"
I'll post a few quotes in the replies.
1/n
@mecfs @longcovid
#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #PostCovid #PostViral #MedEd
RE: https://disabled.social/@ahimsa_pdx/115992177959522535
Update from #MEAction
"Why We Launched an ICE campaign"
https://www.meaction.net/post/why-we-launched-an-ice-campaign
"Congress cut $1 trillion dollars from Medicaid over 10 years, gutting healthcare access and home and community based services that tens of thousands of people in our community rely on to survive. Meanwhile, in the same bill that stripped money from Medicaid, Congress allocated $85 billion to ICE."
#USPol #MEcfs #LongCovid #ChronicIllness #Disability #ICEout #AbolishICE #Resist
Folks with chronic health issues, I can't stress enough how much a good sun hoodie has helped me with handling summer
They're marketed toward outdoor athletes, and most of us with chronic illness are pretty outside that circle so you may have missed their awesomeness!
Here's a good video on comparisons between hoodies. I have two, one REI brand that seems to work well, and a Taema from Arcteryx that works a bit better.
(1/2)
Edited 1y ago
we talked about dissertation timeline and writing and graduation stuff today
so uh,
anyone (esp #neurodivergent and #ChronicIllness folks) got tips for writing that actually work? 😬
fwiw: “write a lil every day” is not helpful advice here that gives me literally no idea what to do thank you
Edit: Volunteers must register to get a link to Monday's kickoff session!
Register here:
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
🗣️ ME/CFS Advocacy Week starts on Monday, March 23
First Zoom call starts at noon Pacific, 3 pm Eastern (will be recorded)
More details in the participant toolkit, see links below.
Canva version:
https://www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view
PDF version:
#USPol #MEcfs #PwME #LongCovid #PwLC #PostCovid #MedEd #ChronicIllness
Edited 172d ago