This Is What It's Like to Be a Teen Living With a Chronic Illness

04/08/2015 04:14 pm ET | Updated Jun 08, 2015

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 the knowledge that sometimes we are going to have to feel worse before we can feel better. We are sick at a time of our lives when we are supposed to feel invincible. Life isn't in our control anymore. As teenagers we want to have that control and when we don't get that it makes it hard to cope.

Teenagers are able to understand what is happening to them even if they don't get it fully. We don't have the experience adults have, which can make things confusing and complicated at times. Again all these emotions get mixed up in our head and we become frustrated and angry. Being sick and dealing with all those added emotions on top of trying to manage the normal "teenager" aspect of life is quite the ordeal.

We are also at that age where we are gaining more independence than we ever had before. We're able to go out with friends without our parents, driving, heading off to college and building a life for ourselves. Just imagine being 14 or even 18 years old and suddenly having everything stripped from you -- all your independence. 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 doctors appointments and to have someone be there at the hospital with your during your stays almost 24/7? I think that is pretty difficult for a grown adult to even grasp much less teenagers. Our friends can't really relate to us anymore because they don't 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 want to go to school but we just can't. Missing out on social events and just the daily aspects of life for hospital stays, treatments and doctor appointments makes us feel isolated. We don't want to loose our friends. Life goes on with or without you, and sadly, when you are sick life often does have to go on without you because you are in the hospital.


You start to have that isolated feeling that no one understands you. There's no one to relate to and you certainly aren't a normal teenager anymore. It is hard enough to be a teenager trying to figure out what you want to be when you grow up. Adding on a chronic illness makes that 10 times harder. Sometimes I feel like life honestly hates me some days. I can never win with this war and 98 percent of the time life doesn't go my way. If life went my way then I wouldn't be sick. I wouldn't have all these diseases that people can't pronounce or have never heard of in their life. I wouldn't have all these tubes sticking out of my body, and I can certainly tell you I would not be taking all these pills that I am taking now. I would be healthy, I'd be back playing soccer and attending school every day.

Adults are supposed to get sick as they get older. We aren't supposed to be sick. We should be the healthy high school star athletes, but we aren't. Some of us have grown up being sick and in the hospital but to others it's a whole new world. The younger kids don't know what's happening. They are left in the dark about many things and they don't know why they are getting sick from their medicine or if their treatment plan is even working. But us teenagers we know. We can experience the bad news firsthand. We see our parents cry but yet we understand that pain too. We 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 is supposed to happen and what isn't.


Most importantly we are not little kids so don't treat us like that. We are not 5 years old and we are very capable of understanding what is going on in our bodies. We are just like any other young adult except we have these extra challenges in front of us. Our disease does not inhibit our ability to comprehend what you are saying. For most of us our brain is exactly as it was before our diagnosis a year or two ago.


All I am asking is please don't forget us. Treat us like any other teen would be treated. However, understand that 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 just overwhelm us. It is hard for us to share with you exactly how we feel because most days we don't even know. We are not adults and we are certainly not children. It's certainly a crazy journey and it is not an easy one either. All I ask is that you treat us like any normal teenager, and are able to help us along the way but also give us some space. That's the only thing we truly want.

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