#mecfs

[miinobobeano]

It bothers me so much that the healthcare system relies so much on the patient's ability to advocate for themselves, organize their history, and be so persistent against every medical “professional” who says there’s nothing wrong/they can do. But so many struggle with fatigue, brain fog, and face such ingrained systemic barriers, that the people who need and deserve help and support can’t access it.

I saw something recently that resonated with me: “Access shouldn't depend on who has the energy to fight for it.” And I’ve never agreed with anything more.

[huskbateman]

Something that really effs me up is how a large amount of society's "undesirable" adjectives are traits you can acquire due to disability.

Unemployed. Lives with their parents. Provides little to no economic value. Physically weak. NEET. Social outcast. Burden on others. Useless. Out of shape. Needs special care and attention. Over-sensitive. Medication-reliant.

[no-lava]

to me as a disabled housebound bedbound person the amazing digital circus is a chronic illness and disability story.

i broke down crying and had to pause the episode when Zooble said "But I had dreams and goals! This just sucks" because FUCKING SAME.

but sometimes people lose their place in the world. their dreams and goals are inaccessible. their bodies become unrecognizable. their personalities and emotions become unrecognizable. they deny reality, reject companionship. they dissociate from their lives and past selves. they lose the ability to be a part of the larger world and do the things they used to do and live the lives they always lived.

I dont think they will leave the circus and i hope they wont because i dont want a cure story.

sometimes you lose your life and you just have to figure out how to keep living afterwards.

and at least having someone else there makes it bearable. as long as you have other people, you can keep living even if your life is over.

[myalgicencephalomyelitiscfstom]

Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

[lovercrip]

i talk about medical fatphobia a lot and kinda feel like ranting again. it negatively affects every aspect of the care i seek and receive, yet no one except other fat people speak about it.

it is insidious, it affects everything, fat people die from it. but no one speaks up.

i am mostly housebound, and the time i spend at home, i spend 95% in bed. i live with severe chronic pain and moderate-severe MECFS to name the worst of my conditions. i struggle with walking both due to excruciating pain and due to PEM & crashing from MECFS. i am mostly housebound, and the time i spend at home, i spend 95% in bed.

i use a rollator, but it isn't enough, i need a powerchair. but when i scheduled an appointment with OT i got told that they can clearly see my need for a powerchair, but that they won't prescribe one because "i need all the exercise i can get".

it is torture, it is cruel.

all my health issues have been blamed on my weight, to the point where they will not even examine me. they see that i'm fat and won't bother to even do a physical exam. i get denied treatment, i get denied medications, i get denied lifesaving mobility aids, i get denied healthcare.

i am scared. my pain will remain severe and my MECFS baseline continues to worsen, because of medical fatphobia. and no one talks about it. no one.

LEARN ABOUT MEDICAL FATPHOBIA.

SPEAK UP.

THIS IS ABLUT MEDICAL FATPHOBIA AND FAT DISABLED PEOPLE — DO NOT DERAIL.

[kookysnell]

yeah, chronic illnesses are so trendy these days. it couldn't have anything to do with the ongoing mass-disabling pandemic that everyone is so keen to ignore, right?

[i-the-spoonie]

[clockwork-col]

does anyone else, with any chronic (physical or mental) health issues, feel like every little thing is an uphill battle to get people to listen?

like, let me give an example with my mother. me: “any form of physical activity makes my symptoms worsen.” her: “have you tried gentle stretching? that could be helpful—“ me: “no, that doesn’t help. that counts as physical activity.”

and we just keep going back and forth.

i tell someone my symptom and they give advice without considering whether it will be actually helpful — or if i’ll even be able to do it.

and everyone does this. my mother, my father, pretty much any doctor i’ve met, random adults who find out about The Symptoms, etc.

like for the love of the gods please stop directly contradicting and ignoring me when i tell you my objective lived experience. PLEASE.