Robot Diver 🌊🌬️🍃🌿🌸🌱🌱🌱

What's the worst medical advice you've ever been given?

Mine ties between three.

"You should start eating everything you're allergic to and it will all work out in the end."
- An Internist

"You should quit being lazy and get a job, then you will stop being so tired and depressed." - A Rheumatologist (I have MECFS)

"Why would you bother to get an EDS diagnosis, there's nothing you can do about it if you have it?" - Yet another rheumatologist

I'm fucking tired and scared of specialist appointments these days.

#chronicIllness #mecfs #medicalTrauma

Apr 2 at 5:11pmWeb
Show threadsecretslothApr 2
@RobotDiver I've gotten those last two more than once from different specialists. Also advised to exercise more to cure both MECFS and extremely exercise intolerant POTS. Not even with the help of a PT. Hi, dangerous? Especially since I also have seizures. Blood loss to the brain can trigger them, increasing the fall risk and the danger from the potential falls. 🫩 So many doctors are literally a danger to their patients.
Show threadRobot Diver 🌊🌬️🍃🌿🌸🌱🌱🌱Apr 2

@secretsloth

100%. I feel like I persistently have to be armed with knowledge. If i had known then what I know now on the EDS stuff, i would have said "because I don't want someone to prescribe me something that can cause aortic separation and that seems like a pretty legitimate reason to know if I have it."

Show threadsecretslothApr 2
@RobotDiver my last rheumatologist told me it was pointless to get tested for it "because it's rare." Bro. You're a rheumatologist. You treat patients with rare conditions daily. So you of all people should be aware of the problems that can arise when rare conditions go undiagnosed, yes?? Like. That guy is such a quack that my neurologist literally does his job because he seems to know he's useless. Didn't actually say so, but I saw *a look* when I mentioned him. Big yikes.
Show threadPomegranate Pirate 🏳️‍🌈🏴‍☠️Apr 2
@RobotDiver @RobotDiver lol now, but it was “why were you touching yourself there?” Geezus. 🙄(women’s health visit over bumps I found)
“Just accept it, use a cane.” A hip that needed replacing in my 40s that was excruciating. Got a second opinion of course.
“Watch what you eat and take tums” gallbladder needed removing. (Thank gosh for the ER that immediately took scans and found the issue. And wtf why did I have to suffer months?)
Show threadRobot Diver 🌊🌬️🍃🌿🌸🌱🌱🌱Apr 2

@Pomegranatepirate

Yeesh

Show threadPomegranate Pirate 🏳️‍🌈🏴‍☠️Apr 2
@RobotDiver thinking about it now there’s more. Ugh. So many dismissive responses to serious issues. I think it’s being AFAB in the medical system.
Show threadRobot Diver 🌊🌬️🍃🌿🌸🌱🌱🌱Apr 2

@Pomegranatepirate

100%

Show threadCetrariaApr 3

@RobotDiver I think I needed to read this thread because I was operating from a place of assuming 3 myself.

My worst was "you're overweight, eat less and move more" (turns out it was PCOS, POTS and MCAS, and I was already only eating ~700 calories a day)

Show threadStrfnurfnApr 3
@RobotDiver Are there even good rheumatologists?? I just keep hearing the most awful experiences with them. Maybe the field just drains the empathy out of people 😕 Sorry you had to deal with that.