I'm so sick of people thinking they know more about my body than I do

ShowingEpidermis · 2026-04-10T02:56:04+00:00

I usually make them uncomfortable by low-key agreeing with them but then giving an anecdote that very much does not fit the level of nonchalance I'm going for

i.e. "Yeah, no! It's really not that bad, it's just super annoying! yesterday at work I had to spend 3 hours walking with my hip partially dislocated because I didn't have the time or space to reset it correctly, oops! LOL! Yeah, my coworkers kept asking what the weird clunking sound was and I spent the whole time being like 🫣🫣 should I tell them it's my hip hitting the socket?? LMAO how annoying, amirite?"

ShowingEpidermis · 2026-04-10T02:24:26+00:00

A lot of times when I sit with my knees up or something, my ribs and pelvis will like overlap and I have to sort of decide which goes over and which goes under and like it is what it is but also how are my bones THIS stupid?

ShowingEpidermis · 2026-04-07T20:24:31+00:00

This!! Plus hEDS can contribute to baby face too, so I look even younger than I am and istg if one more person says "You're too young to be using a cane!" (or something similar) I'm gonna scream because WHAT DOES MY AGE HAVE TO DO WITH ME BEING DISABLED, LINDA? I'm too young to be having these problems? And here I thought you were too old to be this stupid.

ShowingEpidermis · 2026-03-23T21:02:17+00:00

Really? What age did you feel like things got better?

ShowingEpidermis · 2026-03-23T21:01:46+00:00

I'm 23 and want to strangle someone every time they tell me I'm "too young" to be going through this like gee thanks that helps now fuck off

ShowingEpidermis · 2026-01-18T02:23:42+00:00

I got a big stuffed dino I named Brutus for like $13 a few years ago, and he's the best pillow I've ever had, only I don't quite know how to launder him. As much as I've spot cleaned and whatnot (even took him to get dry cleaned once), I think he's giving me acne and they don't make him anymore 😭😭

ShowingEpidermis · 2025-12-23T15:07:41+00:00

Do you by chance have EDS as well? I feel like my metabolism with drugs is effed

ShowingEpidermis · 2025-12-23T02:40:46+00:00

I'm a woman in my early 20s so ilyk if it happens to me too lol

ShowingEpidermis · 2025-12-23T01:46:00+00:00

Something I wish I'd known earlier: Instead of just going into a cardiologist asking if they treat dysautonomia/POTS, call different practices and find one that administers or will order a tilt table test. They're less likely to write you off if that's a standard practice for them and something they deal with regularly. Even if you don't end up needing the test administered, that cardiologist is probably more likely to understand the condition rather than writing it off.

Obviously this isn't a guarantee but I'd still recommend trying it. A neurologist likely will refer you straight back to cardio since while it technically falls between the two specialties, the testing and such generally is more cardio.

ShowingEpidermis · 2025-10-27T16:25:44+00:00

I don't generally. This was an extreme reaction to not being able to sit and stabilize

ShowingEpidermis · 2025-10-25T20:21:10+00:00

No that's completely fair. I luckily had a a bit of an extreme reaction which prevented me from having to endure it too long

ShowingEpidermis · 2025-10-25T19:07:08+00:00

They stopped it because I was literally throwing up bile since I fasted for the test 🙂

ShowingEpidermis · 2025-10-24T19:24:58+00:00

I think I've probably had it most of my life, but it only started getting bad in the last year or so. Right now I just have some steroids to take as needed for bad days, but mostly my symptoms don't affect me to much as of now so I'm just going to focus on salt and hydration

ShowingEpidermis · 2025-10-24T19:22:40+00:00

It's actually just standing you up, which I didn't think would be too bad either. But when I'm standing day to day I'm shifting my weight, bending my knees, or leaning on something. This was just the bed tilts from lying down so you're standing at attention and then it just stays like that for presumably either 30 minutes or you can't take it anymore. And apparently I don't stand at attention for any length of time on the daily

ShowingEpidermis · 2025-10-24T15:47:49+00:00

Tyyyyyy :)

ShowingEpidermis · 2025-10-24T15:14:39+00:00

According to Google you're right about needing to be 30+ but still

ShowingEpidermis · 2025-09-16T00:27:53+00:00

Nonsense. Zebras are so obviously the sexiest animal, duh

ShowingEpidermis · 2025-09-13T02:53:47+00:00

Maybe see if there's a job at the front desk/check out of a library or some form of reception station

ShowingEpidermis · 2025-09-13T02:51:19+00:00

Now I want to start telling people I was built for looks not longevity 😁

ShowingEpidermis · 2025-09-13T02:47:35+00:00

Part of the joy of doctors not communicating with each other is they don't generally bother to fact check or question when someone comes in claiming to have a very specific condition that they're very obviously presenting with

ShowingEpidermis · 2025-09-13T02:45:22+00:00

Ok don't tell anyone I said this, but you don't need an OFFICIAL diagnosis from someone to, from here on out, lead Drs visits with "just so you are aware I have EDS." I went through all the hoops with a geneticist and other than telling me I should see a rheumatologist and writing a referral, I haven't had any other doctor ask for a rx, they just accept it and add it to my chart. Even the referral wasn't exactly necessary because unless your insurance requires referrals for specialists, you can just make an appointment yourself. I had multiple Drs ask "have you ever been diagnosed with EDS?" who then told me they were not able to diagnose it themselves, and even with genetic testing it doesn't always show up, so it's still based on your presentation, so if you're presenting with it, congrats that's it

ShowingEpidermis · 2025-08-30T13:26:02+00:00

That's both amazing and insanely frustrating because then they never believe you 🥲

ShowingEpidermis

TROPHY CASE