#not physical therapy though because my health insurance wont fucking cover it :))))))))))))

[unheavenlycreatures]

long post

lolol i know i usually dont talk about social justice stuff on this blog but,

uh

hey

fun fact

my literal physically debilitating, life-ruining genetic disorder,

that took me 7 years to get a diagnosis for because up until then doctors hadn’t fucking heard of it,

which causes me to dislocate things literally all the time,

that made it so that my entire childhood was spent in debilitating pain,

which made it so that i could barely walk,

which made it so that i couldn’t lose weight when I ate just as much as every other child I knew,

which caused me to be relentlessly bullied by other children,

which caused my mother to be ashamed of me for ‘not being as active as her friend’s kids’ even though i was literally always in pain,

which caused me to cry myself to sleep almost every night from about ages 9-13,

which resulted in my friends calling me a drama queen and leaving me in a literal fucking ditch at one point when I had dislocated my leg, and left me to crawl on my belly home, crossing streets at an achingly slow pace, in agonizing pain, without anyone to help me at age 12,

which the doctors diagnosed as ‘being fat’, and even my pediatrician called me an overweight duck at age 10,

which has resulted in several surgeries, years on crutches, wheelchairs, with mobility aids, 

which results in bullying and cruel jabs from my family because i’m “too young” to have joint pain

which means i can’t participate in sports probably ever,

which i’m currently struggling with w/o treatment because my health insurance won’t cover physical therapy anymore (because of course it won’t, not now that i’ve found a PT that treats my condition)

which makes it blindingly painful to write for longer than maybe 20 minutes

which makes it impossible to hold a pen correctly

which resulted, once, in my walking around on a snapped foot for four days without assistance because I was used to that level of pain

which resulted in my walking around on a hairline fracture without visible pain for a full two months because i was tired of being made fun of and was used to much higher levels of pain anyways,

(due to being forced to wear the wrong shoes at my high school graduation--not by a misunderstanding faculty member or teacher, but by my mother, who knew my limits, knew that what I was telling her was accurate, but didn’t fucking care because she wanted her kid to look perfect),

which ruined my childhood,

my ability to stand up for myself,

my relationships with several of my family members,

my self image,

which aged me much faster than I should have had to,

which made me incapable of forming close friendships due to the bullying and cruelty I had to deal with when I was very young,

which STILL results in bullying (in a fucking university, of all things, because i’m a ‘fatass’ and a ‘wimp’ and ‘not REALLY disabled’)

which NOBODY cares to try and accommodate,

my genetic disorder 

is not yours to appropriate!!!! wow!!!!

Some people know what it is now, but that doesn’t mean you can call yourself ‘so EDS!!!’ because you’re flexible!

You don’t get to use the label because you think it’s cute to be a ‘spoonie’!

That’s not what that is.

Until you’ve suffered from the pain that comes with Ehlers-Danlos and gotten a diagnosis, you don’t get to use it as a fucking joke. 

You, an abled person, don’t get to talk about how ‘ugh my spoons are sooo low after a long day’--when what you mean to say is that you’re tired--when you haven’t sat yourself down and tried to use a handful of spoons to try and explain to your little siblings why you can’t go and play in the snow with them, without having done anything else that day.

You, an abled person, don’t get to call yourself an ‘eds freak’ because you’re flexible and saw a girl on YouTube with EDS pull her hand backwards.

You, an abled person, don’t get to do a flexibility test on the god-damn-fucking internet and decide that you must have a horrible physical condition.

You, an abled person, don’t get to call yourself a fucking ‘zebra’ when you’ve never dealt with the humiliation of not being able to take a shower for days on end because you’re in so much pain.

You, an abled person, who have never experienced the sobbing relief of being told, finally, that there’s something wrong,

you don’t get to do that.

My childhood,

my pain,

my abuse,

my life,

is not yours to use when it suits you.

Not yours to make fun of.

Not yours to gain pity points with.

Not yours.

Not yours.