ett skogsrås resa

i am 14 and when my mother tells people about my illness, all i ever hear is “aren’t you too young to have that?”. yes! i want to scream. i’m too young for any of this. they put me on steroids. they don’t tell me about the side effects. the first morning i wake up and feel like i’m floating. they’ve fixed me. i’m free.

at 15 they put me on Areva and my hair falls out. it decorates my bathtub in rings, my scalp clearly visible between the last straggly strands. when i go to her in tears, despite 90% of patients losing their hair, my doctor tells me this is not a side effect.

i’m 16 and feel like i’m going mad. i can no longer sleep. i cry hysterically sometimes and other times i am violently angry. i hurt myself. i beg my doctor to let me stop taking steroids. she doesn’t understand. in secret i stop taking them altogether. it’s life threatening, but in my mind it’s less dangerous than the alternative. it’s been ten years now and i still can’t sleep like i used to.

i’m 17 and i’m too sick - i haven’t told most people, and i miss a lot of school. i lose friends and grow apart from my peers. finally, nervously, i decide to be open about my illness. i begin telling people casually in conversation. it feels good not to keep it all in any more.

i’m 19 and i’m not sick enough. i tell people still, but now they don’t believe me. you could never live alone if you were that sick, they tell me confidently. some days their words hurt more than my own failing body.

i’m 24 now. i am still too sick for some people and not sick enough for others. some days i wish i did “look sick”, but i know that comes with its own struggles.

it’s still difficult, but it helps to know that there are people out there who understand and are doing their best

When a disabled friend or family member tells you they can’t do something in regards to an invitation or plans you made, your response should be “Okay, we can hang out later then.” if you have to do the thing or “Okay, let’s do _______ instead” if the thing was only a possible suggestion.

Your response should not be “Why, but it would be so much fun!!!” 

Your response should not be continuing to push the idea on them.

Your response should not anger at the person.

We aren’t saying we don’t want to (hell, we might long to do the thing) we are saying we can’t.

Lmfao sit down and hush, “dude”. You obviously don’t get it. 

I mean first of all, you’re totally wrong on everything. They need a cane now or in the near future? They’re going to get a cane! They’re getting a thing they need! It’s going to help! These are Good Things and you being a poop is totally unnecessary and the REASON so many of us are scared of getting the help we need. 

And your attitude about Trying to Get Better and Working on Not Needing [Them] is so laughably ignorant AND irrelevant. 1) It’s none of your business where anyone is in treatment. 2) It’s none of your fucking business where anyone is in treatment. They could’ve tried all the possible medications and therapies in the world, or they could’ve tried exactly 0. It’s. None. Of. Your. Fucking. Business. 

People who don’t need mobility aids or other assistive tech don’t get it. Always saying sorry and giving pity looks and making pity sounds, what exactly are you thinking? Wheelchairs and rollators and canes and walkers and crutches are Good Things! They give us freedom! They help us do the things we want to do! And man, having a stick to whack y’all with or wheels to run over your toes is DAMN great! 

The thing is, my doctor is a ‘man’. This ‘man’ told me I had to get pregnant right now before it’s too late. I told him I didn’t want to get pregnant and explained the multiple reasons but what, do you ask, did my doctor have to say about this? ‘Well, better have a kid now because just imagine how depressing it must be being a thirty-something woman without children and a husband?’

Me? I’ve asked 4 different doctors for some kind of permanent sterilisation—tubal ligation or Essure or whatever—and I get a pat on the head and a “You’d regret it if you did.”