Honestly so upset right now. I brought up how I have a lot of symptoms of a rare epilepsy, ICOE-G, to my neurologist. He told me a bunch of factually incorrect information (that since I didn't have a clear post-ictal phase or lose consciousness during a FOCAL AWARE seizure it's not epilepsy, and that fixation-off sensitivity doesn't exist. It does), and completely just dismissed me out of hand.
He literally googled the syndrome because he had never heard of it before, read the AI overview, and said "you don't have that."
OMG that's awful! I am so sorry!!
Absolute medical negligence.
I'm not asking for every doctor to have heard of every condition/disability. And I would encourage educating yourself right then and there. At least to get a basic understanding of it.
(Because it can take forever to get another appointment. And if a doctor educates themself at a later time, your symptoms may get really bad. (I don't know a lot about ICOE-G. I did a Google search - and read actual websites I trust. I'm still learning.))
But not even looking for medical journals or something is so harmful.
And to make matters worse, reading the AI overview.
AI is very famously wrong like all the time.
If the AI said you'd have more extreme or other, possibly more dangerous symptoms than you do - and if you start having those symptoms - it might be a medical emergency.
(Another example of AI harming disabled folks.)
Doctors' egos are ridiculous. If you don't know something, say that and learn more.
This is, I think, a good example of something someone I follow on Instagram says a lot.
(Her name is Bonnie.) She says if you're (general you) going to not listen to disabled people and try to withhold healthcare (or control who gets it), you shouldn't work in Healthcare.
Her Instagram is bonniedoes [Link to her Instagram here]
Because doctors brushing off disabled patients unfortunately happens so often, it's good to have an advocate with you at doctor's appointments if you can.
An advocate is another person, usually nondisabled or perceived to be nondisabled, to sit in your appointment with you to take notes while you listen. But also to make sure you're not brushed off or gaslighted. Often, another person, a witness, being present is enough to make doctors not be asses.
It's also incredibly important to learn how to advocate for yourself.
Links to videos to more information regarding both of these (Tiktok): video 1 video 2
It sounds like you know a lot about what you're talking about already. That's good.
I don't know if you do this but I've seen advice that might be helpful:
Bring a folder of research you've done when talking about specific medical conditions.
Doctors often think/assume they know more than us and our bodies than we do. ("Us" being disabled folks.) So show them you know what you're talking about.
It won't completely stop all doctors from being ableist jerks, but it might help.
