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
Artist: alleyralkyrie
#mentalhealth #chronicillness #chronicallyill #autoimmune #depression #bpd #autism #friendship
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
![[a guy being prayed over by a woman - he has bandages on his head and his arm in a sling]
You tried to de do too much! washing α cup and putting the bin out, what were you thinking?](/proxy/post_attachment/856729/cd9409e963.jpg "[a guy being prayed over by a woman - he has bandages on his head and his arm in a sling]
You tried to de do too much! washing α cup and putting the bin out, what were you thinking?")
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
![SATIRE Chronically Ill Woman Excited To Try New Treatment That Will Financially Ruin Her
[pic of woman giving 2 thumbs up]
MyBodyIsTryingToKillMe.com](/proxy/post_attachment/887808/efb1a3322e.png "SATIRE Chronically Ill Woman Excited To Try New Treatment That Will Financially Ruin Her
[pic of woman giving 2 thumbs up]
MyBodyIsTryingToKillMe.com")
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 15h ago
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
