#classical eds

there are 13 types of EDS, and hEDS is by far the most common subtype. it naturally gets the most attention as a result of this, so for anybody who has hEDS, use this month to shed a little light on our friends with rare and ultra rare subtypes. they could use our help!

i have immense privilege. i have doctors who know what hEDS is, and take me seriously. it may feel like a rarity to come across that as someone with hEDS, but can you imagine how rare it actually is to find doctors like that when you have a rare or ultra rare subtype?

And unlike most people with healthy bodies, you’re not going to be miserable for a couple of days but eventually fight it off. Your body is going to shut down. You are going to be in danger—go to the ER, be closely monitored, hooked up to dozens of machines and be drugged with dozens of medicines that trigger weird as fuck side effects danger.

And your usual symptoms related to your chronic illness, the debilitating ones that leave you in constant pain and fatigue, and render you a barely (if at all) functioning human being? Yeah those are about to get a hundred times worse. And they’ll distract the doctors because either

1️⃣ the doctors won’t believe you’re chronically ill (I can’t tell you how many times ER doctors have told me I can’t possibly have my ⁉️DIAGNOSED VIA DNA TEST⁉️ illness because “you’re only in your twenties, sweetie. it’s probably hormones or anxiety. 😘”) but still be concerned over these symptoms that aren’t related to your virus, and go down some rabbit hole, trying to treat the symptoms of your incurable chronic illness and ignore your current sickness you need immediate care for

or 2️⃣ tell you you’re not sick at all, and it’s probably a really bad flair up of your usual chronic illness (until of course the tests come back showing you’re positive for whatever it is this time, and then you’re back to option watered down version of the first option)

Oh, and insurance can only cover a teensy amount of the bill, so enjoy being thousands of dollars in debt 🤪.

I have never gotten a cold or flu or covid before and not been sent to the hospital by my PC or urgent care. On average, I am severely sick for at least two weeks, lose about ten pounds, and have a two to three month recovery period. This doesn’t include if there’s any additional complications like blood clots or muscle atrophy from being bed ridden.

Many sleepless nights

Spent shaking with tears,

The kitchen floor embraces them,

Blanketing their body with quilted tiles,

Distanced and suffering,

The floor is where I lay,

Many tired mornings

Spent with stubborn legs,

To weak to stand,

The kitchen floor holds them tight,

So the floor is where they stay,

Distanced and suffering,

The floor is where i lay,

Many dark evenings

Spent unconscious and cold,

The kitchen floor surrounds them,

Their prone body protected,

Distanced and suffering,

The floor is where i lay,

Who would think,

That cold tile could be so kind,

A refuge from the fog

Ebbing at my brain,

Who would think,

That cold tile could be so kind,

Pulling me down

To rest in its arms,

To rest in its arms,

Me: *in my lab coat* *speed walking from lab to the library*

Everyone: *giving me weird looks*

Me: ???????

Me: *gets to the library does my lab quiz* *sees myself in the mirror after*

I LOOK LIKE A 12 YEAR OLD DRESSED LIKE A DOCTOR

lmao

Everyone:

I hated barre. But I even miss that.

I hated warm ups but I’d kill to be a a sun filled studio.

I hated my body for it’s size and proportion. I hated it so much I forgot all the amazing things it let me do.

Now it’s different.

My body is trying, to keep me safe, to keep me healthy, to keep me warm. But it’s not like a lot of others.

They call this disease a one in a million shot. For me it’s still hard not to feel like it was the universes cruelest joke. I grew up thinking pain was normal, only to find out it would only get worse. My joints are as delicate as butterfly wings. My heart beats like a humming bird. My skin is mapped by lightning bolts, scars that won’t heal. Even my heart shaped face and the youthful glow is all written in a code that I had no idea existed.

One gene changed my life. One gene has caused so much change. Some for the better, others not as much.

I want to dance again. And I can try, and I will. But part of me feels chained to limitation. Because there are bad days. There will be injuries. There will be days I can’t leave my bed. There will be things my body simply can’t do.