#heds

but there is a sort of medical doomerism that exists because of these difficulties that i think actively dissuades people from getting the care they deserve, and this issue compounds on the other issues and really needs to be addressed. despite how doctors may act to you, you are the expert on your symptoms. not necessarily what is wrong with you, but what you are experiencing, and you are allowed to say no to your doctor. you are allowed to get a second/third/fourth opinion and shop around until you find a doctor who believes you. in fact in my shopping around i have found a lot of doctors love it when you throw other doctors under the bus, if worded strategically. it's very similar to that strategy of "well my friend thinks it's this," it puts you and the doctor on the same side of trying to rule out or confirm an issue against an unrelated third party.

again, i understand the barriers. it is expensive and time consuming. not everyone can do it. yes. i understand. but it is possible to get a doctor who believes you and actually get treatment for your problems, and that is something you deserve, and it also something you need to believe going in or you're going to give up before you get the chance. it is exhausting and demoralizing to wade through the bullshit, yes, but there are good doctors trapped on the other side of this system who can get to you if you keep trying as best you can. it's not easy. it's not accessible for everyone, which is a huge part of the problem. but it is possible.

more people really need to be taught about how to feel a sense of agency as a patient. the fact no one teaches or explains this to us is a huge issue. but one of the first things I learned after my hEDS diagnosis (that other people! including doctors!) told me was I am the captain of my own care. Every doctor I see is part of a team of people I consult with regarding my symptoms and care. If they're not a good teammate, you can get another one. Shifting this worldview has dramatically changed my relationship with healthcare and the efficiency of my own doctors' appointments, which radically improved my care.

i dont know. like, guys. i have a complicated relationship with this. on top of hEDS, i was born with a rare condition that's about 1 in 10,000 births that would have left me blind had doctors not intervened quick and early before I was even a toddler. I grew up seeing a doctor every four months who meticulously tracked my extremely rare and specific issue that could take a nosedive at any time. i saw him every six months up until is 30-year retirement. at the same time wading through all the bullshit that was the rest of the system. i have a hesitancy to write off doctors and the healthcare system as a whole because the work of doctors shaped my entire life and quite literally how i see.

I've got elhers danlos syndrome!

Funny enough I created a character like a year and a half- 2 years ago w the condition not even knowing lmao. I think I had a brief suspicion, but I mainly did it cause I knew someone that has it and wanted to incorporate it in a character.

At least I know I can write this character accurately now.

The literal only plus side to this goddamn thing