Hey. Remember when Lara said people succumb to their EDS bc it's easier??

That looking too sick is bad and you[r internalised ableism] should always want to win? And how that Inspiration Trash made others look upon her with awe?

TW: Self abuse

But remember when she violently beat herself up, slashed her face, threw herself into a brick wall, and ended up in hospital for 2wks all to "make the invisible visible" after getting lots of attn from an accidental black eye a yr earlier?

But now, if you have a wheelchair, tubes, lines, or stay on your couch you've either "succumb to your illness" or were "left to deteriorate" by doctors bc you didn't have a dx.

Diet and physio would've prevented that visible display of EDS.

But remember how insisting conditions are rare delays dx drastically and leads no drs to consider them? Guess more folks will be "left to deteriorate on their chairs" given the new stance on rarity.

But wait.

Remember when, in countless interviews, Lara said EDS was "not rare, rarely diagnosed" and frequently said (w/o evidence even) that it's probs closer to 1:1000 not 5000?

But then when research came out confirming that stance they freaked out, said no and insisted on its rarity?

If you missed all those times that figure was cited, there are too many to find, but here's a small sampling in addition to the above video.

But oh wait, remember how the 2017 criteria rewrite stronglyyy favored Lara's presentation despite many of the 12 in section B not being backed by research that they're markers routinely seen in hEDS types?

And then the focus was ALL about a hEDS gene?

But remember when, in the last year, we suddenly pivoted to caring about the rarer types, witnessed her submerging herself into the Rare Disease Orgs and doing an about-face on the "not rare just rarely diagnosed" claims?

Oh right.

She learnt she's not hEDS. She's rare. Oops.

So, I guess all those people who succumbed to their hEDS, had visible displays of their disability, and didn't have the audacity to walk a marathon against drs orders, half of it on a broken foot, and a week after recovering from a chest infection...

...shouldn't feel bad now?

Bc you don't have that type anyway? Lololol no no, silly me. In the same interview she disclosed not having hEDS she still gave the same damaging message to them.

"The more I do, the better I am!" Sitting on a couch all day? Nu uh. Dissociate! Overdo it!

Tear all your tendons, weight train, ignore your pain, and raise $10k to bike from Cambodia to Vietnam. BE. INSPIRATION. PORN!

Make the invisible visible?? No way! Don't look sick. Hide everything! Don't succumb! ....unless you need to beat yourself to be seen or given attn.

And if you've noticed I have gone from diplomatic, educational and only fact-based to snarky, intolerant and even a bit rude?

You're right.

Bc this KILLS people. These messages have hurt my friends. They've cost some of them their lives.

I have no tolerance for ableism. For shaming. For self-aggrandizing, hypocrisy and the promotion of the very societal ideals that cost us our lives.

Run your org all shady and dishonestly? Fine. I'll just disseminate the info. But hurt us? After hurting me PERSONALLY?

No. At some point I have to say no more. I do not tolerate this. I do not tolerate ableism. I do not accept you calling me crazy and mad. I do not tolerate hypocrisy, lies and a harmful representation of disability.

People have BEEN patient and fact-based. It's time to be upset.