karlpybara, to disabled
@karlpybara@disabled.social avatar

I hate how ableist activists can be.

I constantly see things like ''if you're not going to protests for this issue, you're part of the problem'' or ''don't call yourself an ally if you don't do XYZ''.

Like, I can barely get out of bed on a good day, the best I can do is share posts on social media, if that's not ''good enough'' for you go fuck yourself.

tomkindlon, to chronicillness
@tomkindlon@disabled.social avatar

Using co-design methods to develop new personalised support for people living with : The ‘LISTEN’ intervention

https://onlinelibrary.wiley.com/doi/10.1111/hex.14093

"The lived experiences of people with , in relation to their condition and their experiences of healthcare services have provided a primary source of evidence”

@chronicillness @spoonies @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of

https://journals.sagepub.com/doi/10.1177/23743735241252475

"There are several arguments for how saying “We don’t know” might benefit patients.

@longcovid
@chronicillness
@spoonies @mecfs

1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

“The absence of epistemological humility leaves an unacknowledged gap between patients’ lived experiences and the (lack of) medical knowledge about their illnesses.

This gap leaves the provider vulnerable to bias. Racialized, gendered, classed notions about whose bodies are “really” sick may begin to prevail."


@longcovid @chronicillness @spoonies @mecfs

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Ok overdone it big by trying to be normal and post/interact.

Will pay in worseened symptoms tomorrow (dreaded )

Nice talking to you. (The people I managed to get to.)

(Such is life/existence with and )

@mecfs

AceyAngel, to disability
@AceyAngel@disabled.social avatar

Looking to support a fellow Autist whilst navigating your own ASD journey?

I invite you to follow my Autistic Diaries Blog!

I share insight on my own personal experiences as a Chronically ill Autistic person. My life, my diagnosis, and some information about Autism and my chronic illnesses (Coeliac and Graves', as well as POTS, and other conditions)

https://buymeacoffee.com/addriannawa/welcome-my-autistic-diaries-blog

@actuallyautistic

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

Unsure how common this is in other affecting cognition, but when you have the writing errors you’re almost guaranteed to make are:

  1. Double the same word
    or
  2. Exclude it altogether
    Or do both!

So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by

I did both when composing this!

I miss my old brain!
😩

@mecfs @longcovid @chronicillness

britt, to cfs
@britt@mstdn.games avatar

The elusive good night sleep. 😴

I get one of these once every 3 months, maybe?

I shall compound my interest and make today a rest day. Onward to binging Netflix.

#cfs #ChronicIllness #medical

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