Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

World’s Strangest Meet Cute