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.
