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EDSociety: What You Need to Know

    Over the past few months, several Ehlers Danlos advocates have been discovering a multitude of concerning, disappointing, scary or just downright odd things about the EDSociety. We have had a ton of dialogue with them as both an org and with CEO/president Lara Bloom on Twitter and FB, but it has provided no clarity, only escalation. Instagram, however, has remained mostly unaware — completely in the dark. Thanks to the platform not being conducive to layered conversation or sharing links, screenshots, studies, tweets and more, IG stayed in a blissful bubble. That was never more evident than witnessing the support on both their recent “EDNF impostor website” statement and then their ABSURD stance contesting the latest research on hEDS’ prevalence - based on their “opinion” and how they “feel” (which, btw, who’s the “we” there? Lara? The board? The medical team? Who weighed in? [update: they added a list of members behind the statement since this post, but little else explaining
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A Truly Difficult Post

[I opened this blog solely for this message - for those with screenreaders and find image text too hard to read. Will likely remove in a couple of weeks!] Hi guys. This is a very hard post to write, along w/ a small “goodbye”. But, it’s also more than that. For 5-6 months I have not been okay - and when I say not okay, I mean the kind of darkness you can imagine, as well as some you couldn’t possibly. I’ve been doing the work - harder work than many of my lows combined. It’s been fruitful, but also left me completely ……gutted. Empty. I stared down the worst of the worst for months, but am now a literal captive released who has no idea what to even do w/ freedom. In the past, I always just turned and went right back bc I didn’t know the first thing about existing w/o someone telling me how. Since I was an infant, my life was under specific, controlled instructions to meet others’ demands or fantasies, no deviation — told who I am, given my friends/partners, spoon fed my inter
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