I’m 18 and I’m almost 99% sure I have hEDS. I’ve been researching for months and it’s shocking how much the symptoms overlap with what I deal with and have been dealing with since a little kid. I’m waiting for a diagnosis but I’ve been reading about eds and this has to be it. I’ve read about so many different things, I’ve made excel sheets about all the symptoms of almost all diseases ever to compare and this just comes out every time. At first it was nice to know that there’s an explanation for how I feel but right now all i read about it seems so negative.

Everywhere I see these awful stories about people not being able to do their dream job anymore, not being able to go out with friends anymore, feeling like their body is 99 years old even though they’re only 30, not even being able to do groceries. It’s making me feel so so bad and hopeless since eds gets worse with time. Maybe it’s too early to cry about it since I don’t even have a proper diagnosis yet but here we are.

Right now I already have constant pain and tiredness and the thought of it getting worse makes me want to cry. I want to live a life like most people and all I’m reading makes it seem like I won’t be able to.

So I just wanted to ask if any of you feel like you still live happy and full lives cause if I have to sit at home, not working and just thinking about pain for the rest of my life I’ll go insane.