Sometimes, I still feel so able bodied.
Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.
Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.
We need to recognize the collective trauma disabled people went through and are still going through with covid when everyone around us told us that our lives were less important than their convenience. That "only the sick and elderly will die so why should I do anything differently?"
I lost my faith in humanity at that point and I don't think I'll ever be able to get it back.
Doctor calls you with your bloodwork results and just says “I’m really mad at you” and then hangs up
who up experiencing emotions they can talk to no one about
When talking about disability and chronic illness, people don't understand that happiness isn't optional. Humans have a fun meter in their brain just like the sims, and that doesn't change for disabled people.
I love recognizing limitations and accommodating myself when I can, but at the same time, I WANT to do things for my own happiness. I WANT to cosplay at an anime convention, even if that means I won't be able to walk for 3 days. I WANT to go canoeing with friends, even if that means I'll be sick for 2 months after. I want my room to be clean and I want to decorate my space and I want to go have fucking fun in the real world and not just video games for once.
And when it comes to instances of stuff we do purely for fun, people still talk down to us and give us the "know your limits" speech like us having fun exists in the same context as breaking our bodies for the sake of capitalism. It's not the same thing. Quit shaming disabled people for doing shit. Let disabled people chose informed risk for the sake of fun and happiness. Fun and happiness are not optional.
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 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.
Regular reminder you don't owe anyone information about your health, disability, or medical treatment. You have the right to provide as much information as you are comfortable with and no one is entitled to more.
actually though medical trauma is often really glossed over in general discussions and depictions of disability. i always get the sense that fiction mis-attributes medical trauma to hating being disabled but like. even people who are perfectly fine with their disability can experience extensive and severe medical trauma. people who are diagnosed or undiagnosed. people who were born disabled or became disabled after birth. you have to submit yourself constantly to the whims of people with significant power over you! you're forced to consent to things that you might find invasive in order to access healthcare. if you're trying to access healthcare you have to expose your difficulties, sometimes pain, sometimes suffering up for someone else's dissection and perusal. and it feels like shit even when they don't dismiss you or berate you, or assault you, or gaslight you, or deny you healthcare. god help you if you're also trans or black or brown or can't speak the local language well or a number of other intersecting issues
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.