My best advice to sick and disabled kids, as someone whose been sick to the point of disabilty since I was four, is to pick up a creative hobby. Learn to draw, take up knitting, learn the guitar if you're strong enough to hold one and take up ukulele if you're not. Do something that will stimulate your brain and give you the satisfaction of creation, as well as distraction.

My parents' idea of occupying my time thru appointments and infusions and hospitalizations and sick days was just piling me with books and video games. Which is fine! Great escapism, fun to do, saves you from boredom. But sometimes you don't need to escape, sometimes you need to create, and not knowing how or where to start fills you with a feeling of frustration and helplessness. Reading gave me a fantastic imagination and I created worlds in my head that I had no way of getting out to share or saving for posterity.

My parents had hobbies of their own. Mom's a fiber artist and dad's a musician, and I asked them repeatedly over my childhood to teach me what they were doing but they always waffled on it and never did. Hell I didn't even learn how to cook until I was eighteen. So I was left with books and video games and no sense of satisfaction in my ability to do anything.

I took up art in my mid twenties, mostly by watching YouTube tutorials or checking out how to draw books from the library. They say the best time to start is yesterday, but the second best time is to start is today. I don't create art every day. I have more pain and exhaustion days than I do creative days. But when I can create it feels empowering, and power is something I don't have as a disabled person.

And I'm not saying take up a creative hobby so you have something to sell to fall back financially when you're too sick to work (obvs if you want to you can, but that's not the point of this advice). Paint pictures just to hang up in your bedroom. Crochet clothes for your dog. Write songs with lyrics that only make sense to you. And if no one is willing to teach you these skills, seek out resources and basically teach yourself.

I don't know how to end this post, but I am begging every sick kid (and sick adults too, for that matter) to not just wait for your life to end, distracting yourself solely with passive hobbies like books and games that have been scripted out to have pre-determined endings decided for you. Find an outlet you can do to create, for your own sense of satisfaction if nothing else.