chronic illness resources

A blog about chronic illness, chronic pain, disability, and mental health. Please do not ask me if you "count" as a spoonie. Asks & submissions are welcome! I may not always remember to respond to DMs. about

[chronic-illness-resources]

if you have chronic illness / chronic pain / physical disability related blogs you like, please tell me in the replies! recommending yourself is totally fine. most of the disability blogs i’ve followed have become inactive in the last few years :( and i don’t make many original posts here like i did way back when.

i’m not super interested in blogs that are largely like, positivity and affirmations. much more interested in stuff like medical research, medical anthropology, self advocacy, medical mistrust, disability rights, disability archives, disability art, and general insight/information relating to coping with health stuff.

this isn’t my main so i can’t reply, but thank you to anyone reading/responding 💖

[cannabisbutch]

One thing i wish both drs and some other disabled people would stop saying that "pain cant kill you" bc it can. Literally, just too much untreated pain can stress ur body out so bad you have a heart attack or stroke or other potentially lethal medical event. And its 100% completely preventable, but opiod hysteria is so bad drs are giving people NSAIDs only for spinal surgery (real thing, i spoke to this person on twitter/X)

Pain kills. Stop demonizing pain medication

[4rk-in-the-road]

I think the reason a lot of leftists struggle with disability justice is that they haven't moved past the concept that discrimination isn't bad because it's objectively "wrong." yes, sexists are objectively wrong when they try to claim women are dumber than men. yes, antisemites are objectively wrong that jewish people are inherently greedy and run the state. yes, racists are wrong when they try to claim that white people are the superior race. and so on.

but then with disabled people, there are a lot of objective truths to the discrimination we face. people with IDs/LDs do fall behind and struggle with certain concepts. physically disabled people are often weaker and less capable of performing demanding tasks than able bodied people. many of us with mental illnesses are more reckless and less responsible. a lot of us are dependent on others and do not contribute much "worth".

and guess what? disabled people still deserve a place in the world. disabled people still deserve the supports they need. because they are people, and that should be enough to support them and believe they deserve a place at the table.

if your only rebuttal against discrimination is its objective inaccuracies, you are meeting bigots where they are at. you are validating the very concept that if and when people are truly incapable of being equal to the majority, that means they are worth less. this causes some leftists to then try to deny the objective realities of disabled people and/or become ableist themselves.

your rallying behind marginalized groups should start and end with the fact that people are completely worthy of life and equity, because they are fellow human beings and that should, frankly, be enough.

[bee-fox]

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.

[oops-all-birbs]

Watching the Pitt made me wonder how many times I've been to the er, out of curiosity

And. 11 times (that i rmb, might be more). Over 31 years. It's once every 2.8 years

It feels like a lot, so it got me curious:

How many times have you been to the ER?

never been

only once

2-4

5-7

8-10

>10

Voting ended onFeb 15

[myalgicencephalomyelitiscfstom]

Shivaani Chugh (@shivaanichugh) on Threads

Chronic illness isn’t just medical. Psychologists call it biographical disruption: the way illness rewrites your story, goals, and even sens

[augmentedpolls]

What was the cause of the worst (physical) pain you’ve ever experienced?

chronic pain/chronic illness

break/sprain

kidney stone

labor

period cramp

an actual weapon

getting hit in the balls

something else

results

Voting ended onJan 6

[boykeats]

Crip Camp: A Disability Revolution (2020), dir. James Lebrecht and Nicole Newnham

[ID: Six black and white images of disability rights activists during the section 504 sit-in of 1977. The first image shows two people sleeping on a mattress at the foot of a set of stairs, with a wheelchair sitting in the foreground. The rest of the images are close-up shots of individual activists in their wheelchairs or sitting on couches during quieter times in the protest.

The narration from activist Corbett O’Toole reads, “It’s like the world always wants us dead. Disabled people know that every day of our lives. The world doesn’t want us around and wants us dead. We live with that reality, so there’s always gonna be, uh, “Am I gonna survive? Am I gonna push back? Am I gonna fight to be here?” That’s always true. So, if you wanna call that anger, I call it a kind of drive. You know, you have to be willing to thrive or you’re not gonna make it.” /end ID]

[mamoru]

if you, as a disabled person, are ever told you are an “inconvenience” in the process of trying to assert your rights, you are not being an inconvenience, you are being oppressed. fight

[mamoru]

also, being an “inconvenience” is a valued and effective method of disability activism. one reason the ADA got passed at all was the capitol crawl where disabled people crawled up the steps of the capitol building and “inconvenienced” lawmakers. being an “inconvenience” is direct action. being an “inconvenience” is activism. people who actively deny disabled people rights and dignity are deserving of inconvenience, because you have rights and deserve to do whatever it takes to keep them. your life is worth more than the comfort of your oppressors.

[kubrickstares]

#solidarityisfortheablebodied, started by nealcarter

[kubrickstares]

““It’s a lot about acceptance. It took me 15 years to accept that I had any kind of a disability, even though I obviously do. It goes against our culture so much to actually accept something. We mistakenly think that if you accept something then you’re, like, dooming yourself. You’re resigning and totally giving up. It’s actually the opposite. In accepting it more, I can now live around it better . I can schedule things more efficiently and not cancel on people, the way I did when I was in denial about it. Acceptance of pain, in the last hundred years or so, has been discouraged by a lot of medicine. Pain has been considered fundamentally a psychological thing —- if you accepted it, that meant that you were mentally attaching yourself to it.””

—  Paula Kamen, Head Case, on Salon.com (via au-nte)

[mountaincripple]

there are disability aids for literally everything…. and that includes intimacy!!

its very important to me that you know this!!!

here are just a few examples:

18 and over post pls <3

first my credentials: i’m physically disabled (wheelchair user, chronic pain, spasms in extremities, muscle weakness, numbness and atrophy in all limbs, seizures, etc) i’m an ex SW and i used to work at an adult store (trying to get rehired again pray for me pls)

pillow forms:

my fave is the liberator wedge, but there’s a lot of shapes. can be used in a variety of ways to ease strain.

hand harnesses:

extremely helpful if you can’t grip for long periods of time. just like regular harnesses, you can fit it with a toy and use it on yourself or a partner.

hands free toy holder:

suuuper helpful if you can’t grip at all/if you’re like me and can’t stop your hands and arms from doing as they please. can be used on yourself or a partner.

intimacy chairs:

usually used by people with paralysis but also helpful for profound muscle weakness and if you can’t hold yourself up/produce motion reliably

sleeves:

generally most useful if you have a penis, fantastic if you don’t have steady hand motion but can grip semi reliably.

mount/toy mount:

these have a ton of variety. you can get ones that are a pillow with a spot for a toy, or ones that act more as a sling for your body (and can be used with toys or partners)

and remember these are only a couple! if you are disabled and struggling to be intimate in any way, there is a tool out there that may very well help you!!!

[powerchairpunk]

a recent artwork about the connection between my disabilities and my identity as a punk rocker

[byjove]

nobody is faking POTS, fibromyalgia or ME/CFS for attention because nobody gives a fuck if you have POTS, fibromyalgia or ME/CFS. these are three conditions people are always accused of faking online (largely because they’re common chronic illnesses and young women are disproportionately effected by them 😃) and it’s like…..look around bitch. when was the last time you saw a fund for a cure CFS walkathon? you ever see a Google banner for fibromyalgia? these are illnesses that suck to have and that you are often treated like absolute dogshit by the medical community and pop culture at large if you do have them. you don’t get positive attention, or any attention at all, if you’re at home laying down 85% of your life.

[cleolinda]

Alice Wong, disability rights activist and writer, dies at 51

Wong died Friday because of an infection at a hospital in San Francisco, a close friend said.

Alice Wong, a disability rights activist and author whose independence and writing inspired others, has died. She was 51.

Wong died Friday because of an infection at a hospital in San Francisco, said Sandy Ho, a close friend who has been in touch with Wong’s family.

Ho called her friend a “luminary of the disability justice movement” who wanted to see a world where people with disabilities, especially ones of marginalized demographics who were people of color, LGBTQ and immigrants, could live freely and have full autonomy over their lives and decisions.

The daughter of Hong Kong immigrants, Wong was diagnosed as a small child with a progressive neuromuscular disability. She used a powered wheelchair and an assistive breathing device.

On social media Ho shared a statement Wong wrote before her death in which she said never imagined her trajectory would turn out as it did, to writing, activism and more.

“It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture,” Wong wrote.

[wishful-seeker]

As a disabled person instead of people saying "i hope you get better soon!" I would much rather here any of these:

"I hope you can rest soon."

"I hope you have a good day soon."

"I hope the pain lowers soon."

Saying "i hope you get better soon!" Sounds like "i have never interacted with a disabled person, i have no idea what to say to in this situation so i will say the thing i think im supposed to say."

We are not going to get better in the way you assume.

Be more genuine with us. Treat us like any other person.

[fiddleheadfinn]

Pill life still life