Regular Reminder You Don't Owe Anyone Information About Your Health, Disability, Or Medical Treatment.

Asking for help while being disabled shouldn't feel so much like handing someone your autonomy and saying "take this away."

to me, the universal trust in doctors from people who haven't experienced medical mistreatment/neglect is akin to the trust that upper middle class and white people have in the police. they haven't experienced the mistreatment themselves so they assume it doesn't exist. they assume that every doctor or police officer is only in it for protecting people. they assume that the people who made the rules for these organisations are somehow all-knowing and know the truth about what is morally correct for society. the difference is that there actually is such thing as a good doctor, while there is no such thing as a good cop.

I basically live my life in bed when I’m not actively doing other things. That’s the only way I have the energy to do anything at all ever. When I do one of my hourish rehab classes, I’m usually flat in bed for most of the rest of that day and the entire next day, because delayed-onset fatigue is a thing my life is defined by.

It’s not remotely what people think of when they think of “pacing”, but it’s much closer to the daily reality of most people who live with fatigue disorders than the “I take a break for half an hour then I’m fine to go on” people picture when they hear the phrase.

I have heard the word “pacing” at almost every medical appointment I have ever mentioned fatigue at, and never yet had the slightest advice on doing it. Not even the ongoing CBT and Mindfulness websites recommendations I get if I ever mention low mood etc. The term is applied as a panacea by people who have zero understanding of what “pacing” is, how to achieve it, or what it actually means in the context of most fatigue disorders. Or how much pushback most people with those disorders will have when actually trying to implement it, because most people, including healthcare professionals, parse resting as “not trying”.

For people with fatigue disorders, pacing is *radical* in its effects on capacity. It lets you actually have some life, which is the big thing fatigue disorders feel as if they take from you. But we are stuck figuring it out for ourselves against enormous pushback.

who up experiencing emotions they can talk to no one about

disabled people should be allowed privacy. visible disability isn't an invitation to demand personal information from someone. and disclosing disability isn't an invitation to lay out each facet of that disability in excruciating detail. someone having a medical episode deserves privacy even if that episode happens in public. someone who is disabled and struggling or taking a break deserves to refuse people offering help without having to explain why. a disabled person who mentions some things about their disability but not every little thing is under no obligation to explain anything more than they already have. disabled people don't just deserve basic rights. they deserve dignity and grace and respect. and they deserve privacy

Why why why do medical professionals so insistently push people with chronic pain to “just push through it.”

I’m in a flare right now and my left hip has been hurting no stop for almost three weeks. My physical therapist knows this and I reminded her last time I saw her. So tell me why she proceeded to have me do a bunch of jumping exercises landing with all my weight on my left leg.

I told her the exercises were hurting a lot and she told me to just work through it. Well it’s been half a week and ever since that appointment my hip has hurt even more than before.

i be checking my phone like someone cares about me lol

Does anyone else feel like they kind of have to train their able-bodied friends?

I know that sounds fucked up, but y'all know what I mean. Teaching them things like "slow down" and how to let me set the pace when we're walking, or how and when to offer help, or a HUGE pet peeve of mine: taking the ramp with me instead of splitting off to take the stairs.

I know they're not dogs, but y'all gotta admit that they do take some training.