Almost all of us with chronic illness have experienced the “it’s not going to kill you so what do you want us to do?” Brush off. They seem to think confirming something won’t kill us is all they have to do. What we really want? A diagnosis. Treatment. Improvement to quality of life. Validation - ThreadSky

broadwaybabyto.bsky.social • 39 days ago

Almost all of us with chronic illness have experienced the “it’s not going to kill you so what do you want us to do?” Brush off.

They seem to think confirming something won’t kill us is all they have to do.

What we really want? A diagnosis. Treatment. Improvement to quality of life. Validation

Reposted from this1girl is here too

Do doctors even ever actually try to figure out what's happening with a person if they're not dying anymore? I'm not seeing it.

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chelseagsummers.bsky.social•39 days ago

I feel this intensely

streborm.bsky.social•39 days ago

How do you get a diagnosis with a 5 min consultation. I spend more time on a dog Behavioural assessment.

skandian.xyz•39 days ago

I've been seeing a rheumatology team for the last 6 or so years

recently the one I had been seeing retired, and his replacements have brushed me off constantly every time I've tried to bring up *any* issue, assuming I'm there for painkillers lmao

it's exhausting, and I don't get the help I need

skandian.xyz•39 days ago

At least previously I got *minor* help, but it was very much "it's not killing you, what do you want? you want to live not at a 6/10 base pain? nah that's not viable, have you tried sucking it up and not being shit?"

sm-greenarts7.bsky.social•39 days ago

Or slowly dying undiagnosed because gov't wants to bother with money making research and anything else doesn't matter

ej-drake.bsky.social•39 days ago

maggieboxey.bsky.social•39 days ago

House MD ruined my expectations. Really rude awakening when I got sick

gingercrone.bsky.social•39 days ago

This is Ehlers-Danlos Syndrome in a nutshell.

skandian.xyz•39 days ago

EDS mistreatment is a huge fucking mood

I can't even bring it up with specialists without it just getting shrugged off and a multitude of symptoms associated to other diagnosis instead of exploring the possibility of EDS

gingercrone.bsky.social•39 days ago

They either don't believe it exists, or if you present in A&E with something totally unrelated, shrug & say, it's your underlying condition. Until I insist on blood tests which show a raging infection.

skandian.xyz•39 days ago

Ugh yeah :c

I'm so sorry

gingercrone.bsky.social•39 days ago

And the irony was, I'd been sent to A&E from urgent care as they suspected appendicitis. Absolutely nothing to do with hEDS!!

gingercrone.bsky.social•39 days ago

I'm sorry you're fighting to be heard. I saw a private genetic specialist for my diagnosis, which was accepted in full by the NHS, where my cardiologist wasn't allowed to diagnose it (though she identified it first). It's bonkers.

fabricandflora.bsky.social•36 days ago

Took me 20 years to get a dx from the time I first suspected EDS and suggested it to a doctor. I stopped suggesting it, and when I started saying my PT said I was hypermobile, doctors started asking me if I'd ever been evaluated for EDS. It's like they're not interested if it wasn't their idea.

judilecoq.bsky.social•39 days ago

Actually, in the case of multiple sclerosis, which I am living with, as the nerves to the organs, get weaker, I believe that can kill you.

thebystander99.bsky.social•39 days ago

Yeah. RELIEF, in any form.

kitwhitfield.bsky.social•39 days ago

I can’t not notice that in order to get prescribed ‘standard’ non-addictive painkillers, I had to get so anxious and depressed they thought my life WAS in danger. That’s what it took to get their attention.

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