A4: when it comes to info people have id say I want chronic illness/disability education to start young. I had no idea I was a spoonie when I was young so I never asked for help, harming my health greatly. I also got a lot of conflicting info about eds from doctors #SpoonieChat
most of the info I got before I found my most knowledgeable doctors was from others with ehlers danlos & social media. I want docs to have/give up to date+standardized info on eds & similar conditions. I want docs to stop perpetuating harmful ableist stereotypes of disability too
I recently spoke to a med student and at her school seems like the #eds education is really good but 99% of the doctors ive met were unfamiliar with it or misunderstood what it is. doctors have misunderstood many of my health conditions-saying some are fake, psychosomatic, caused
by my own actions, a "trendy" diagnosis i want for attention, that i can't possibly have over 10 health conditions, and more. Ive had docs perpetuate many harmful ableist stereotypes like: asking for accessibility is for lazy people, wheelchairs mean giving up, meds are bad and
mean you are an addict even if its not a controlled medication or addictive med, you can just "get used to" severe daily chronic pain, its okay to deny pain meds based on my age and how I look, and more #SpoonieChat

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More from @FightAbleism

21 Oct
if @joerogan cared about his followers he would stop spreading vax misinformation, minimizing the impact of the pandemic, and promoting ivermectin. he took tons of stuff when he got covid including monoclonal antibodies but doesn't think it helped at all? ivermectin was all that
helped according to him. @joerogan also conveniently left out a lot about the safety of the vax & how herd immunity works. vax if high risk. don't if not he says. well vaxes aren't as effective for high risk people & if youre at risk+cant get vaxed u must rely on herd immunity
which is something we will never achieve if only the sick/at risk vax. also the less people are vaxed the more mutations, deaths & hospitalizations happen. @joerogan if natural immunity was enough to protect the healthy COVID WOULDN'T BE A PANDEMIC! natural immunity is also less
Read 9 tweets
20 Oct
whenever I ask mom to make the lights dimmer she complains being in low light will give her a headache-I ask for low light as light causes headaches/migraines/sensory overload/general asd burnout/eye pain long covid&all this triggers the pain/nausea/fatigue from other conditions
I don't want to cause anybody with any condition pain so I try to compromise. its very difficult I can't have no light [ideal & sometimes necessary for me] but I have empathy so I don't complain about her needs.
it really bothers me how every single time I ask if I can dim the lights mom has to tell me how awful it is & it always makes me feel like a bad person. the hypocrisy also hurts. having some perspective would also be nice. none of my headaches or migraines are treated w/ OTC meds
Read 5 tweets
20 Oct
mutual aid links to donate to below
Read 5 tweets
16 Oct
oh also the best part of today was the Walmart pharmacist telling off walgreens. also found out my meds have to be REFRIGERATED! WALGREENS NEVER TOLD ME THAT!!! also @Walgreens never had it in the fridge always on the shelf and Walmart had it in the fridge. the incompetence hurts
@transpotatoface can u RT so people can beware of Walgreens? cuz this is way past unacceptable
Read 4 tweets
15 Oct
part 5: after a bit of work I was able to transfer my perscription to a Walmart in another town. I know if I stayed with @Walgreens I would continue to have late meds, get excuses, and have my health decline. I knew id continue to go to the ER [high risk during covid] due to this
part 4: they are still messing up! they deleted my other perscription thinking it was a duplicate [it wasnt] and now 9 days after my original order & blaming everything on the supplier decided to change supplies and say it will come Monday. its a bit late now isnt it?
part 3: update on my @Walgreens problem a med that I need daily to stay out of the hospital has been ordered every day since last Friday. they told us theyd call with news & never did multiple times. never accepted responsibility either
Read 13 tweets

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