Thread by @thestripeysloth

Through @SimonoffBob I've spoken to a cpl ppl who are newly dx'd or suspect they have hEDS, and I promised some resources.
Since there's an #EDSToolkit and lots of papers/research available through Bob + others like @HMSACharity @t7_linda @DrEReinhold @H2OhTwist, I thought ...

I would instead share some of my personal resources. These are PSAs I wrote to my family&friends and posted to FB a couple of years back. They received an overwhelmingly supportive response. They took the onus off me, and put it onto others. And it was so very cathartic. They...

are quite long and I'm new to Twitter so bare with me while I try to work out the best way to post them lol.
Maybe they will give you help communicating difficult things to others in your lives. Or maybe you'll just feel some solidarity.
PSA 1 - "Coming out" w/ hEDS
...

PSA 2 - Personal responses to things people often say to chronically ill ppl.
Both are supported by yr videos from @hotpinksun , whom I adore for her advocacy and has inspired at least two of my hair dye jobs.

@MetalGearSlut @ladyblake13

I will also be writing another one in the next couple of weeks specially for my in-laws, which will essentially be What I Need From You If You Want Me To Visit You At XMAS in North Queensland. I'll post that and everyone is welcome to it 🤷

PSA 1

PSA 2
(some things have changed for me since then eg I now use a cane more often than not when out of house, but pretty much all still applies!)

@kroni_c I thought maybe this thread might be some use to you?