What I Wish People Understood About Teenagers With Chronic Illnesses

I think people often forget about the sick teenagers. We aren’t adults yet, but we aren’t little kids either. We can understand what the doctors are doing to us and why. Sadly, what comes with that is sometimes knowing we’re going to have to feel worse before we can feel better. We are sick at a time of our lives when others might feel invincible. You might think nothing can ever stop you in this world and then — boom — life isn’t in your control anymore. As a teenager, I want to have that control, and not having it makes it hard to cope.

Teenagers like me are able to understand what’s happening even if we don’t fully get it. We don’t have the experience adults typically have, which can make things confusing and complicated at times. Being sick and dealing with all those added emotions on top of trying to manage a normal-teenager life is quite the ordeal. We’re at that age when we gain more independence, like being able to go out with friends without our parents, driving or for some people, heading off to college. But just imagine being 14 or even 18 and suddenly having all your independence stripped from you. What if you needed someone to help you get up to go to the bathroom, to walk, to shower, to help give you your needed medications, to take you to your doctor’s appointments, and to have someone be there at the hospital with you during your stays? I think that’s pretty difficult for a grown adult to grasp, much less a teenager.

Our friends can’t always relate to us because they might not understand. They don’t know what it’s like to be sick and not have the energy to get out of bed in the morning. We might want to go to school, but we just can’t. Missing out on social events and the daily aspects of life because of hospital stays, treatments and doctor’s appointments can make us feel isolated. Life goes on with or without you, and life often has to go on without you when you’re busy being sick in the hospital and not able to do anything.

It’s hard enough being a teenager and figuring out what you want to make of yourself and grow up to be. Adding on a chronic illness can make that 10 times harder. Sometimes I feel like 98 percent of the time, life never goes my way. If life went my way, I wouldn’t be sick. I wouldn’t have all these diseases that people can’t pronounce or haven’t heard of. I wouldn’t have all these tubes sticking out of my body, and I wouldn’t be taking all these pills I’m taking now. I’d be healthy, and I’d be back playing soccer, attending school every day and finishing school on time.

Some of us have grown up being sick and in the hospital, but to others, it’s a whole new world. The younger kids might not know what’s happening. Sometimes they’re left in the dark about many things; they don’t know why they’re getting sick from medicine or if their treatment plan is even working. But we teenagers can experience the bad news firsthand. We can see our parents cry and understand that pain, too. We might cry, too, because we know something bad and scary is happening. We’ve already been exposed to life as it is, and we know what’s supposed to happen and what isn’t.

We are very capable of understanding what’s going on in our bodies. We might be just like any other young adult except we have these extra challenges in front of us. My disease doesn’t inhibit my ability to comprehend what you’re saying. I’m not a little kid, so don’t treat me like that.

All I am asking is this: please don’t forget us. Treat us like any other teen would be treated; however, understand we may not be able to do everything our peers do, and sometimes it might be hard for us to express how we feel when so many emotions overwhelm us. It can be hard for us to share exactly how we feel because most days we might not even know. It’s not an easy journey. Treat us like any normal teenager and help us along the way, but also give us some space. That’s the only thing I truly want.

Follow this journey on It’s Not As Easy As You Think.

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