Latest Posts by chronicstuff - Page 2
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.
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
doctors hate her! This woman is experiencing symptoms that might point to a health problem and wants doctors to do something about it
I've been worried ever since I was born
New favourite thing to do is to remind people of how much they hated lockdown when they say they wish they could stay home as much as I do.
Like no you dont you were miserable when you were forced to stay home all day everyday for the good of your health. Thats my entire existence as a disabled person so pack it in.
giving birth sucks tbh. not only do you and the baby you’re birthing almost die, usually you shit yourself and often you tear your taint. then you have to push an organ out of your body (placenta) and if even a little of that remains in your body, you can hemorrhage to death or develop an infection that essentially rots your body from the inside out. even if you had a relatively “easy birth”, you bleed for weeks on end. even after that stops, your body and brain is changed for the rest of your life, the pregnancy leeched minerals from your bones, that can cause osteoporosis later. minor urinary incontinence is not uncommon, brain scans of people who gave birth show permanent changes in their brain, you’re never quite the same.
I say all of this not to say giving birth is disgusting but it is a harrowing and visceral experience. society downplays how fucking awful it is and makes it out to be a ~magical~ experience but it isn’t a magical transformative experience for everyone. it can be an extremely traumatic experience for someone who wanted to carry a pregnancy to term, much more so for someone who did not want to be pregnant in the first place or someone who knows their baby won’t survive the birth. anyway, abortion is a right. pregnancy and birth aren’t just inconvenient, it’s fucking awful.
people who assign morality to disabilities: you are not above becoming disabled. you will do everything right and you might still find that one day you are not able-bodied anymore. disability and morality have no correlation.
@spacedocmom
went to my general practitioner and suddenly got diagnosed with post covid and cfs. after he had not taken my symptoms seriously in the past. after years of medical gaslighting. i mean i still think its mecfs but thats probably as close as it gets. which is so much better than nothing. nevertheless i don't really seem to feel much about it even after i've recovered for over a week from this draining excursion. just endless exhaustion
i be checking my phone like someone cares about me lol
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.
yknow what i hate so much? when i technically Could do something that requires more spoons like reading or watching something that im not familiar with, but i know i Should give my brain a rest and read or watch the most mind-numbingly familiar and low spoons things i can find instead
if i ever interacted with you and it was awkward just know im sorry and painfully aware that sometimes i come off like a person who is having the first conversation of their life
I was outside today! For the first time in weeks except medical appointments. Went for a very short walk. It was great, but i'll probably have to pay for it and also i'm more sad now than i was before. The distance between where im at and where i would like to be is just too big.
Asking for help while being disabled shouldn't feel so much like handing someone your autonomy and saying "take this away."
Had an appointment with my neurologist today. Guess who went there with a stupid spark of hope to be taken seriosly this time and ended up crying ugly in the parking lot 🙃🙃
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.
Anyway,
You deserve family who try to understand your illness.
You deserve family who try to accommodate your illness.
You deserve family who respect your decisions regarding your illness.
You deserve family who nicely listen to you vent about your illness.
People eventually get diagnosed BECAUSE they are already disabled and struggling. The symptoms don't appear AFTER the diagnosis. So don't expect everyone without a professional diagnosis to be basically fine. That makes no sense.
shoutout to the people who desperately want to move out but can't because they have medium/high support needs, and their family is the only people they have to rely on. especially since autistic and disabled adults are much more likely to suffer from loneliness. i hope you get what you need soon.
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
Your friends and family with chronic pain aren't doing well.
Yes, even the ones that say they are.
Yes, especially the ones that are complaining and lashing out already.
Chances are high that however bad they will admit things are it's actually worse. By a lot.
We're conditioned to be "okay". If we're breaking down at non scheduled times we aren't coping well. I promise.
Your sibling/partner/bestie/parent who is breaking down without preamble on a Tuesday is suffering. Be kind. We're sorry.
How do people keep replying when friends ask how are you? I hate being so negative but often it's my reality like I couldn't do a lot of things today but I'm trying and nothing has changed!! I don't want to push them away by being the one who's always sick