Ehlers Danlos Problems - Tumblr Posts

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.


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yall. I just woke up. It is 3:07 am. Why did I wake up you ask?

because my dumb fucking body hurts so much and I can’t do anything about it. I’m gonna go take a hot shower and see if that helps


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Dance team tryouts are coming up and I really want to join but I can’t. Ehlers-Danlos is ruining my high school experience rn


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Yall the brain fog today has been awful. My thoughts have been reduced to hrnnghnhjjjebjm


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Two years ago I was a ballerina. Classes two-three times a week. I loved it. then I had to quit because I developed very painful bunions that were only described as moderate by medical staff. Fast forward to today, where I can’t even do simple things like walking or bike rides without being completely out of commission the next day. I’ve missed so much school because of my disability. I have no mobility aides. Oh yeah, and my little sister resents the fact that it gets me attention from our mom. Yay.


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Guys I think I subluxated my shoulder


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couldn’t sleep last night because my bones felt like the noise when you smash random keys on an organ at the same time


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2 years ago

Having chronic pain is like so funny cause I'll be sitting here doing maths and all of a sudden: BOOM joint pain, like help? -Hya


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4 months ago

Fucking fucking fucking

"You're still young!! You don't know real pain!!" Then there's me who's sobbing my fucking eyes out because one of my joints dislocated and it hurts to relocate.

"you're too young to have all those health problems!!" Then I'm seizing on the floor for five minutes and come out dazed and confused.

"you'll grow out of it!! You'll get over it!!" Then I'm having a panic attack because something wasn't the right texture.

"You're just being overdramatic!!" Then I'm sobbing and crying because something small triggered me into a PTSD attack.

"Don't be such a baby!!" While I'm crying my eyes out because I'm so overwhelmed and nothing is helping.

"it's not even that bad!!" While I'm on the bathroom floor crying because of the stabbing cramps I'm having because of my period.

"You're so mean!!" As I'm actively splitting because something triggered me.

But yeah, I'm too young to have these though!!


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