The Rules of Living With Chronic Illness as a Young Adult

I’m just like every other teenager. I wake up in the morning, get ready for school, walk to the bus. The only real difference is that a solid half of my body is on fire the whole time. I’m lucky enough to be part of a selective club. Very exclusive, very secretive. Teenagers with invisible illnesses.

Just like the name implies, our illnesses are basically totally hidden from the world. Although you can’t actually see the flames surrounding my leg, and you probably don’t see the electric shocks in my spine, they’re definitely there.

Like all of my friends, I’m on a first name basis with my pharmacist. And I visit the hospital for physiotherapy. And carry around a pill case the size of a large wallet everywhere I go. And fill my backpack with heating pads. Normal things, right? The average everyday teenage activities.

There are almost rules to living as a teenager with chronic illnesses. We experience things most people don’t, and along the way we each come up with our own rulebook of how to handle them appropriately. We wouldn’t want to get kicked out of the club and have to live like our able-bodied companions. For example, on a weekly basis, I get yelled at for sitting in the handicapped seat on the bus or metro! I’d highly recommend this because let me tell you, even if it happens every week for a year of your life, and you get dirty looks with every ride on public transit, it NEVER gets old. Just so much fun!

And the questions you get when you leave class or have to get special accommodations during class? “Where did you go?” “Why weren’t you there during English?” “How come you get an extension on your project?” “Why don’t you have to take notes?” “God, you’re so lucky that you get to skip school! I wish I got to miss as much class as you.” Never gets old or infuriating to hear—you never get sick of people telling you you’re lucky to be in constant pain considered worse than going into labour. I mean, our illnesses are obviously just there so we get out of school. They never affect our lives in negative ways.

My teenage rebellions are just like everyone else’s too. Sometimes I will purposely do things that I know I shouldn’t, like wear ballet flats even though it doesn't give my foot the support it needs, go into stores I know might trigger a panic attack, push myself so hard I can't move and I’m physically and emotionally exhausted the next day. I'm not always able to explain to other people why I do these things, and I’m not sure I understand it myself. But everyone needs to rebel, even people who live by other rules.

Like everyone else, I also spend inordinate amounts of time lying in bed with only a heating pad, because I’ve got so much hypersensitivity that even sheets feel like sandpaper grating my entire body. Everyone else totally picks out their outfit for the day based on what level of softness they need in order not to rip off their clothes and scream because they’re simultaneously on fire, being struck by lightning, and having their skin rubbed with a brick made of gravel.

All of these little rules in my life, in so many young people’s lives, they’re normal. We’re used to them because whether we’ve spent our lives with them or are still learning to cope, this is how our lives are lived. Just like anything, the rules are constantly changing, and sometimes we don’t follow them. But the rules are there, concrete, and life-changing.

Living with chronic illness isn’t all bad. I do get to miss classes, and I do get to have accommodations during school. But all of these things come with a price. And even though I don’t have a choice, and no matter what I want my pain won’t go away, there are a lot of days where I don’t want to pay it. I’d rather not miss class and not have to spend my free time catching up or in hospitals or in the emergency room begging for some pain relief. The reality is that I need these rules because they make me feel less alone. I need them and live by them because they get me through my life without having to give up things I love. Without my rules, as strange and useless as they may seem, I wouldn’t know how to handle my illnesses without letting them take over my life. My rules are just like everyone else’s because they give me the stability to live my life.