Chronicstuff

Sometimes it feels like i am already dead. Not part of anyones life anymore. Locked up in my flat. Just a liability for my parents who dont even like me. Like a ghost who is damned to haunt this room, but still has pain and wifi.

@spacedocmom

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.

You don't owe anyone an explanation of your condition/disability, how or when it started, what meds you take, what tests you've undergone, or literally anything about your health!

It doesn't matter if it's a stranger, a friend, or a relative.

It's your life and you have a right to privacy.

Don't let them guilt you into answering invasive questions.

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

me: ive been bedbound for six months

dr: have u tried getting up?

me:

dr: being upright is good for u to prevent deconditioning

me:

dr:

me: it was in fact the first thing i tried

it's funny that people act like disabled people are such a downer and negative and pessimistic for acknowledging their health conditions when we have to be the most optimistic suckers on earth to repeatedly go to drs with the expectation of actually recieving treatment. did i say funny sorry i meant soul destroying

When abled people are involved, the concept of "doing it once in a while for a few seconds doesn't mean you can do it consistently on command like it's nothing" is easily understood.

For example, if someone is able to walk outside without a jacket in the cold to get the mail, everyone would easily understand that they'd still need a jacket if they were outside for a prolonged period of time. If someone is able to hold their breath underwater for a few seconds, everyone would easily understand that they'd still need an oxygen tank in order to stay underwater indefinitely.

But when disabled people are involved, that concept is somehow forgotten. You can stand for a few seconds? You must not actually need that wheelchair. You can socialize once in a long while if the conditions are exactly right? You must not actually struggle to socialize and any struggle you think you have is just fear and negativity. You can be physically active for an hour on a good day? You must not actually be too disabled to work. You have a lot of knowledge on a topic because it's a special interest of yours? You must be "smart" and any bad grades you get are because you're lazy.