It's EDS awareness month my dudes, AMA

I usually just post on theme days here, but here's something completely different!

May is EDS and HSD awareness month (Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder)

Every year I offer my time and emotional labor to give insight on my experience as a late diagnosed medical zebra for anyone who's curious.

You may notice on all my posts I put "body by EDS" on the post. I often get questions about what it means/stands for and all that. This is your opportunity to Ask Me Anything related to your questions about EDS. I'll probably do a few posts throughout the month with this theme.

As far as the zebra part, well, that's our mascot. Why? When Drs are in school they're told "when you hear hoofbeats, think horses, not zebras" meaning, don't go looking for the rare answer, it's usually a basic answer. "Medical zebras" = rare disease and or those with them. EDS is considered rare.

The problem is, the enforcement of that mindset results in medical professionals then collectively act like zebras are actually unicorns, in that, we are treated like we don't exist at all. Treated like drug seekers, hypochondriacs, like we just have anxiety...

This leads to endless medical gaslighting, neglect, abuse, etc. That compounds to a lot of trauma the longer it goes on to, which makes seeking help even harder. It's a horrible cycle.

Even after you have a diagnosis, that treatment doesn't stop, because there will STILL be medical professionals who treat you like you're making it all up, because most have never even heard of EDS before. It's not as rare as people think, just rarely diagnosed. My own diagnosis is half assed and I don't know what type(s) I have (because you can have more than one type) and it still didn't happen until age 30. I'm 38. The level of pain in I'm without my plethora of medications is unbearable.

We know it's genetic. (I absolutely got it from my mom's side) It's a collagen/ connective tissue disorder. The literal blueprints of my body are basically drawn wildly with a fucking crayon lol. That means any and everything can be affected. From my joints to my skin to my fucking teeth to my organs and veins and more.

It's degenerative too, so it's always getting worse, not better. No matter how good a day I have, it doesn't mean I'm getting better, because I never will. I will get stiffer with the same unstable joints, leading to more pain and mobility issues.

There are currently 13 known subtypes and not all of them have genetic markers. hEDS, the most common one, doesn't have a known genetic marker (though there has been some progress in finding one) but it's most often diagnosed via the The Beighton score (which is woefully inadequate and doesn't check all the joints) the vascular type, vEDS is one of the most deadly.

The diagnostic criteria is actually going to be updated in December of this year. I'm excited. It's supposed to include things like the prevelance of co occuring conditions such as POTS and MCAS and should be a huge game changer on folks getting the help they need. We can only hope.

There's a really important documentary called "Complicated" that's coming to I believe apple TV later this month about EDS and the horrors of how the medical world treats us. I haven't watched it yet (it's available on their own website atm too) but the more traction it gets, the more eyes see it, and the more it will help fellow zebras in the long run. If you have the opportunity to watch it, please do. I haven't done so myself because I already live these horrors, it's going to be a traumatic and triggering watch for me. I've not been in a way mentally where that's a good idea atm.

When people don't understand us, it only leads to harm. I try to to educate when I can, but I'm not always willing to be the teacher (as no disabled human should be expected to educate 24/7) I allow for access during this month though in the interest of awareness month.

All questions should be asked in the comments.
No DMs, NO exceptions.

So, ask away.