Yall, Whats The Benefit Of Getting A HEDS Diagnosis? Every Doc Ive Seen Has Brought Up That I Probably

Y’all, what’s the benefit of getting a hEDS diagnosis? Every Doc I’ve seen has brought up that I probably have it but none will actually evaluate me for it (based on the criteria to my understanding I definitely fit it) and I keep getting told there’s no point in actually getting the diagnosis so they don’t want to do the evaluation. They’ve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they won’t even do the in office evaluation what’s the point of it (I mean unless I have one of the other types)

Can I claim it for myself? I understand if not since I’m not formally diagnosed but I’m just curious.

Mobility Aids should be free.

Fuck abled people and their opinions on disabled bodies

My mother literally said to me that she “believes that I am choosing to be disabled and that she believes that I am healthier than I feel” like ma’am you are not in the same body as me you do not know it better than I do. Do you not think that I wasn’t to be healthier? Do you not think I’d rather not be in pain? You really think I’m choosing this? After saying that bull shit she goes on to say that she only wants the best for me and for me to “get well soon” and arugh I stg she really feels like one of those people who are like “don’t say disabled say differently abled” like gah no there are things I simply cannot do anymore I don’t do them differently I just can’t do them

🎶 Tell me why

My body hates me so much

Tell me why

I’m in so much pain all the time

Tell me why

Everyone always says

Get well soon 🎶

(To the tune of I want it that way by the Backstreet boys)

I have SO MANY I’m really bad with names though so even though I’ve named them all I’ve forgotten most of their names. My favorite/bestie is named Pig and he’s a Pig (creative naming right) that’s dressed up as a cow and he owns my heart. He was given to me by my girlfriend (who uses they/them pronouns) and my life is fuller with the two of them in it. I have absolutely no clue how many stuffies I have in total but it’s probably 100 if not more I just love having squishy little friends

So many people collect stuffed animals!! This has made so happy!!!

Another thing regarding ableism and what not let disabled people be bitter, be depressed, be upset, etc that we have to live with the shit we do don’t say “it’ll get better” or constantly say “you should just look on the bright side” or whatever the fuck they always say about how we should be happy. We are not here to make you feel better. We are not here to be your “inspiration”. We are not here for you to feel better about yourself. We are not here for you to tell us how we should behave/feel. Let us be human