#sorry for so many tags on top of a long rb op

[noagskryf]

It also minimises how serious HSD/EDS is. I don't know a lot about HSD, so i won't say anything about it, but even hEDS, the "mildest" form of EDS, is a multisystemic disorder that ranges from mildly to severely disabling. I have hEDS, and i have neurological, joint, immune, gastrointestinal, renal, autonomic, blood, and dermatological complications and symptoms directly caused by hEDS. No, Emily, your hands hurting from texting in a weird position for hours isn't the same as my organs being too hypermobile to function properly.

And that's ignoring the rarer + more severe types of EDS like vEDS, which is actually life threatening, or brittle cornea syndrome, which can cause blindness, or kEDS, which causes severe kyphoscoliosis and can cause breathing and organ issues. There's 10 more types i haven't even mentioned.

To reduce EDS to just hypermobility with chronic pain makes me so angry and i won't ever shut up about it and i will gatekeep it because i've been told by HCPs that EDS is just symptomatic hypermobility. This meant i had a life-threatening complication during surgery last year, which could've been avoided if i had been listened to.

Also it's really shitty to try to diagnose strangers online in general but that would be too tangentical so i'll leave this here

I wish we'd stop telling everyone with hypermobility and chronic pain that they must have EDS or HSD-- up to 57% of people experience generalized joint hypermobility and up to 50% of adults experience chronic pain

both of these things are exceptionally common with huge overlaps. yes, HSD is common. yes, hEDS is fairly common. no, the vast majority of people who have hypermobility and chronic pain do not have either.

it's also worth noting that hEDS and HSD are both diagnoses of exclusion. if someone has not had any testing done for any condition causing chronic pain why are you suggesting to them that they must have one of these two disorders that can only be diagnosed after ruling everything else out?

not everyone has EDS/HSD!!