#eds problems

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

I've got one obvious (thankfully not so visible) problem in a front tooth which doesn't hurt yet, and I'd really rather keep it that way--and with any luck keep the tooth. The more pressing issue right now, though, is this toothache in a molar that keeps coming back more and more often and giving me trouble eating on the side that has all the molars still.

Guess what's hurting tonight, yeah. 🙄

I would go for one of the closest dental offices. There are a couple with decent reviews attached to the shopping center near us. But, I am pretty sure that I do need some work that requires sedation by now, if I am actually going to force myself into it. Other people's numbing is unfortunately my IV sedation, since locals just don't work and I am frankly pretty traumatized after growing up like that with lousy celiac enamel.

The closest place that I know of which thankfully does offer sedation for "anxious patients" is downtown near the central station. Seems like I should probably just go there straight away if whatever they're going to need do to fix it will require doping me up to tolerate the work, but yeah it's been easier to put off than if it were just over within "strolling" distance.

The mobility problems and need to ask for help from Mr. "Hope a cracked tooth will magically heal itself" don't really help. I don't know that numbing works any better on him either, since he's also bendy as hell with the previously big red beard.

I'm no doubt working this up into a bigger deal than it needs to be, but jfc there is NOT a lot of good history there. And I am not imagining any of it.

but i’m SO. FUCKING. TIRED. of being SO. FUCKING. TIRED. i only have 3 classes rn and there all in the same building and one of my classes is on the second floor and i take the stairs because i don’t want to take the elevator away from anyone who actually needs it but walking from a parking lot almost a block away then doing stairs first thing in the morning is NOT FOR ME. i don’t know what to do. do i need a walker?? a cane??? can i use a walker or a cane if i just get really tired really easily? like if my body is over exerted at all i literally need a nap. i literally go to my car(that’s parked 86,000,000 miles away) to close my eyes in between classes. i just don’t want to feel like i’m on the verge of falling asleep constantly but i can never actually fall asleep!!! it’s a vicious cycle

also i called myself disabled for the first time the other day and i felt guilty?? i have a lot of internalized ableism i need to work through. j bc i don’t have a diagnosis doesn’t mean i’m not FUCKED THE FUCK UP

Me: I mean he's got it from me

Her: he's a cat

Me: he's my child

Her: he's a cat. They're supposed to be liquid

Me: so I'm a cat?

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You do NOT have to be a furry to get in, you just have to be supportive and understanding of it.

You do NOT have to have an official diagnosis to be disabled or to be in the server.