Most disabled people won’t go to the hospital unless literally dying or forced to go against their will We felt this way before Covid, and the pandemic has only made things harder The risk of hospital acquired infection, medical trauma, misdiagnosis & loss of baseline is more than we can bear: - ThreadSky

broadwaybabyto.bsky.social • 4 days ago

Most disabled people won’t go to the hospital unless literally dying or forced to go against their will

We felt this way before Covid, and the pandemic has only made things harder

The risk of hospital acquired infection, medical trauma, misdiagnosis & loss of baseline is more than we can bear:

Comments

beck7422.bsky.social•4 days ago

People with my Periodic Paralysis are all ER avoidant to terrified of it. All of us have traumatizing stories about ERs. Part of the problem is the standard procedures and medications for a normal person aren't the best way to treat us and some are just deadly. Like Glucose IVs.

beck7422.bsky.social•4 days ago

We are typically forced to go to ERs when we are non-responsive and can't refuse treatment. Once we get to ERs the doctors and nurses are furious if we can't respond to what they say. None of us should go to the ER without a Patient Advocate who can speak for us.

toxoplasmosiscrone.bsky.social•3 days ago

And it can happen to anyone who is suddenly taken ill or injured. Medic alert and having that EHR access and other info on a USB drive. Tourists have loads of horror stories, many end tragically and at high monetary cost that has to be litigated and appealed due to layers of insurance jurisdiction.

beck7422.bsky.social•3 days ago

I usually have a print out of exactly how to provide emergency care for me. It prioritized my rare genetic condition first regardless of the reason I am at the hospital for since the genetic condition messes up all types of care for other ailments.

toxoplasmosiscrone.bsky.social•3 days ago

Athletes should really wear and carry their normals as I’ve seen nice low heart rates jacked just to meet average… which is not runner normal.

beck7422.bsky.social•3 days ago

ERs avoid USB drive files since they can be infected and they don't want to introduce a virus into their computer systems.

toxoplasmosiscrone.bsky.social•3 days ago

Which is why I am always annoyed with giant transfer files that some offices will not accept via upload or email. Giant run together files dumped by specialists in formats no machine can use.

phazel.bsky.social•3 days ago

I was assaulted on a train, had spinal injury symptoms, couldn’t walk. I was kicked out of the ER because I had EDS in my history and the doctor deemed them all hypochondriacs and “frequent fliers” despite my having never been there before. I still have additional symptoms from it 6 years later.

kuyvonbraun.bsky.social•4 days ago

Doctors can be surprisingly unsympathetic…

toxoplasmosiscrone.bsky.social•3 days ago

Doctors are ultra conservatives who planned on a profession they thought was stable and economically rewarding. Specialists do well but corporate makes doctors just staff. Job satisfaction as the lean and mean six sigma thinking runs for profit systems? Can you afford concierge medicine?

culturesurfer.bsky.social•3 days ago

The rich don't pay for health care in percent like we do. Though they got rich on our limbs and health. Many of my chronic illnesses I got through working for rich people. I did the work and they got my money.

rareandhungry.bsky.social•3 days ago

Same.

disrepdiary.bsky.social•1 day ago

The other day, I fell completely unbidden and instinctively said, "You're not sticking me in there again." So childhood medical trauma is unresolved, I guess.

toxoplasmosiscrone.bsky.social•3 days ago

Cost increases and loss of coverage and lack of pandemic preparedness? Perfect way to grab all that money locked up in recovering retirement accounts. Death is part of accounting and eugenics. Live short and prosper, that is how you pay to play as a little person.

oleskool.bsky.social•4 days ago

I feel the same way. I've been disabled most of my life. I've had cancer, diabetes and it seems like everything else. I've only had decent insurance a couple of times. So, every time you go, doctors just play you off and get you out of their office. Because they know nothing's covered.

namelesswrench.bsky.social•3 days ago

I have some horror stories from my stay in the hospital in 2023 that have caused people to visibly go pale in shock. I can literally see the hospital out my window and I wouldn't go there unless i didn't have a choice.

lexorchid.bsky.social•4 days ago

to be fair, that's sort of what the ER is supposed to be for, when you're literally dying, but the problem is that non-emergency options basically don't exist. in an ideal world, they'd have appropriate services like urgent cares or a clinic open 24 hours too so the ER could focus on emergencies. 😞

artofsubduction.bsky.social•4 days ago

Fair and true! Unfortunately, the ER isn't helpful if you're dealing with a chronic condition. I wouldn't go to the ER unless I was worried about life or limb, which is why I've never been to the ER. But honestly, even urgent care is hardly worth it, and I only get the help I need from my PCP.

lexorchid.bsky.social•3 days ago

yeah, I've had to constantly follow up with my PCP, but every time he tries to schedule me, he's booked out for 2-3 months past his next intended visit (so a 3 month follow-up is actually a 5 month follow-up) 🫠

justalizzy.bsky.social•3 days ago

Bleeding from my eyeballs.

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