Teenagers are able to understand what is happening even if we don't get it fully. We don't have the experience adults have. Which can make things confusing and complicated at times. Again that gets all these emotions mixed up in our head and we become frustrated and angry. Even adults know it is hard keeping our emotions in check. Being sick and dealing with all those added emotions on top of trying to manage that normal teenager aspect of life is quite the ordeal. We are at that age where we are gaining more independence than we ever have before. Being able to go out with friends without your parents, driving, some heading off to college, and building a life for themselves. Just imagine being fourteen or even eighteen 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 having 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 We don't want to loose our friends because we have often been withdrawn from that social setting. Life goes on with or without you and sadly when you are sick life often has to go on without you when you are busy sick in the hospital not being able to do anything. You have that isolated feeling like no one understands you. There's not anyone to relate to and you certainly aren't a normal teenager anymore. It is hard enough being a teenager and having to figure out what you want to make of yourself and grow up to be. Adding on a chronic illness makes that ten times harder. Sometimes I feel like life honestly hates me some days. I can never win with this war and just because how I want something to turn out doesn't always mean it is going to turn out that way. 98% of the time life never goes 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, attending school everyday and finishing school on time.
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 can't. Some of us have grown up being sick and in the hospital but to others it's a whole new world. At such a young age the younger kids don't know what's happening. They are almost left in the dark about many things that are happening because they don't know why they are getting sick from medicine or if their treatment plan is even working. But us teenagers we know. We can experience the bad news first hand. 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 five and we are very capable of understanding and aware of 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 the exact same before our diagnosis a year or two ago as it is now.
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. Our life varies much different from them in how you need to treat us and the disease. 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.