The Hard Part of Being a Chronically Ill Teenager

            Being chronically is hard. It doesn’t matter how old you are, but there are things that are harder when you are teenager and ill, rather than being a child with a chronic illness or and adult with a chronic illness. This is because when you are young when you get your chronic illness you don’t know any different, all you can remember is having that illness so you don’t know that your quality of life can be or has been better. Also little kids are more resilient and things happen that would knock down an older person like a surgery, a child won’t let that happen they push on like nothing is different. Then when you are an adult when you get you chronic illness you have life under your belt, you have experienced things, maybe made yourself a family, gotten the career you wanted, and while adults tend to have a harder time recovering than children their life experience makes certain aspects of having a chronic illness easier.

            Now when you are a teenager when you become chronically, you are just beginning to get out into the world by yourself. You are just beginning to explore the options that could be, but at the same time you are still holding onto your childlike view of the world. For this reason, there are many tough parts to being a teenager with a chronic illness, and I just want to go through a few of those things that are big in my life and I am sure affect other chronically ill teenagers.

1.)   Your trying to start your adult life while juggling your illness.

Your teenage years are probably some of the most important years in your life. There’s high school, where your performance affects your admissions to college. Then college where no matter what you did to try and prepare things just aren’t the same as high school. And during the beginning of someone’s college years they typical move out and live on their own for the first time. Overall these years are setting up the rest of your life. Your future college depends on your high school accomplishments, your future job depends on your college performance, and your future life in general rests on the fact that you can move out and function without your family. All of this in itself is hard for anyone to adjust to and accomplish, now add a major life altering illness to the mix. Now you’re not only learning how to take care of your basic needs during this time, your learning complex skills that your life depends on. Your remembering to take all of your medications, you’re learning how to run IV fluids, tube feeds and other endless medical tasks. You’re now transitioning to being the one who calls the doctors when something goes wrong, remembering appointments, and making the judgment calls for situations you normally would have your parents help with.

Overall when you are a teenage with a chronic illness you suddenly have two full time jobs, the first is going to school and preparing for your adult life like your peers and the second is fighting to manage your illness and keep yourself as healthy as you possibly can. With the hardest part being finding a balance between the two; where you’re doing well in school activities to further your career development while keeping yourself healthy enough to actually do so.

2.)   You are going to loose things most people don’t loose until they are older.

Being a teenager with a chronic illness you loose a lot of things, one of those things is your innocents. When you have a chronic illness you suddenly have to become wiser than your peers, in order to survive. You learn that while your problems and worries are about medication side effects, surgeries, getting a diagnosis, or weather or not you are trained well enough to do your medical procedures at home, other kids are worrying and having problems about mundane things like who talked to who at the prom, or their boyfriend breaking up with them, what clothes are in style or who’s party to go to on Friday night. This is something that separates you from your peers and in the end, a lot of the time, they are either not mature enough to handle you having a chronic illness or don’t know how to act around or how to include the person with a chronic illness, leading to the drifting away and eventual loss of friends.

Another type of loss that most people don’t deal with until they are older is the loss of a close friend to death, but being a chronically ill teenage you meet people who like you are chronically ill in various ways. You make friend with these people because they understand you and what you go through, because they are going through it too, and sometimes you don’t even have to meet these people to consider them to be one of your best friends. But as is typical of some chronic illness, some of those friends are going to pass away from their disease, and that is something no teenager should have to feel. The loss of that friend bring pain, and grief and other feelings that I can’t put into words, but it also waves in your face your own mortality. It makes you think that if your friend could die from their disease, so could you. It makes you loose that sense of being invincible a lot of teenagers and young adults have.

3.)   You still have the childlike belief that doctors are all knowing.

When you are little you believe doctors are magic, you go to see them when you’re not feeling well and with a little medication or sometimes by just going to the doctor you begin to feel better. Because of this you believe that there isn’t anything that  a doctor cannot do, they have no limits, but when you get diagnosis with a chronic illness as a teenager this assumption gets abruptly ripped away. You realize that doctors can’t do everything. They don’t have a magic pill that makes every disease go away or even a treatment for every disease. Instead you learn that they can only try and mask the symptoms of your disease. Pain killers for the pain, antiemetic's for the nausea, a feeding tube to help you eat but leaves you feeling hungry, this list is endless, and no matter what the doctors do there are times the illness is going to win. Days where all the medication in the world can’t stop your body from painfully trying to self destruct. Days where you can’t get out of bed.

            Even on good days, after being a teenage diagnosed with a chronic illness you can see the doctors’ limitations. Your quality of life can never be what it was before you got sick. You will never be able to do everything you use to do, or if you find a way to do those things it leads to a flair in your illness, and all of this comes back to the fact that doctors are not all knowing and cannot play God. So, being a chronically ill teenager with the ability to absorb the facts that surround chronic illnesses, you understand you are going to have bad days, and by that I mean very bad days where you beg and plead for the doctors to do something more but they can’t, and you are going to have good days but are always going to know that no amount of medical intervention can give you your old life style back.

4.)   You understand the severity and risks of your condition.

When you are a teenager with a chronic illness, the doctors don’t tend to shield you from the “bad” news like the would if you where a child. They come right out and tell you the risks of having a procedure done, everything from the mild risks like a sore through from a breathing tube, to the biggest risk of them all; death because of a procedure.

Teenagers are also told more about what their illness is going to do to their bodies in the long run, than a child would be. We have heard that our disease is degenerative meaning that is is just going to keep getting worse and worse. We know if our illness is one that can take our lives, and how high the chance of that happening is. We have heard that our genetic disease has a high chance that it will be passed on to our future kids, and that is if our bodies haven’t been damaged by all of the treatments for our diseases and we can still have kids. We also know that in most cases our illness isn’t going to go away, and this has a bigger impact on us teenagers because we have our whole life ahead of us, unlike a middle aged person with illness who has already lived part of their life without their disease looming over them. They have had kids before undergoing treatment that might make them sterile. They have gone through college and gotten their dream job when the only thing they had to juggle was schooling, not schooling and their illness. They have experienced things like marriage, travel, or volunteer work without having to work around the obstacles attached to their chronic illness.

Over all being a teenager when you are diagnoses with a chronic illness has many unique hardships that have to do with being a teenager, but in the end these hardships are what bring out our character. They show us that we can be pushed beyond our limits and still survive. Through hardships and trials, we learn the size of our strength and courage, and that no matter what gets thrown at us in the future (be it from our illness or just life in general) we will be able to overcome that challenge.