So this is what you
need to know to navigate your teenage years with a disease. Don't listen to the
doctor when they tell you that you can only eat white rice. You try that for
months to get better and it doesn't work and you end up getting the nickname
"rice girl" from your uncle because that was all they could feed you
when you stayed with them for a week. Learn as much as you can about your
disease because you really don't know enough until you hit your twenties and
that knowledge would have came in handy. In fact, no one in your family takes
your disease seriously because you don't talk about your health and mom thinks
it's just like her IBS and that if you eat something different you'll be fine.
She doesn't quit thinking this way until a few days before you have
surgery...sorry honey, I should have broken that one to you gently. I'll get to
that in a second. The summer before high school you get an opportunity to fly
to California with your cousins to visit the Red Wood Forest but you wind up
having a bad flare-up a few days before you leave with awful diarrhea and
terrible pain and they think you are lying to get out of the trip. This is your
first taste of something you're going to deal with for the rest of your life.
Some people are just never going to understand what you go through so get used
to that. There will be times that pain will stop you in your tracks and knock
you to the floor but you don't know that it's a part of your disease. There
will be times of diarrhea and pain and blood but you quickly brush it off as
nothing because your flare-ups tend to last a week or two or at worst a month
or two, but they are not as bad as what you will experience later. When you go
out to eat you usually get terrible tummy aches and have to rush to the
bathroom, that is also your disease. If you take any of my advice just please
get as much knowledge as you can about your disease and stop ignoring it
because you really need to manage this better. You hardly ever take your
medicine and when you do it doesn't do anything for you. This is because you're
not on the right meds for you and you should really work that out. Your teen
years are not all that bad though! You start dating a guy in 11th grade that
you stay with for 7 years and you are really happy with him. You are a
competitive dancer who ends up assistant teaching by the age of 14 and then
teaching your own classes by the time you are 17 which as you know is your
dream come true. You work 2 jobs, you excel in school, you have great friends,
and you are in wonderful shape. In fact, you pretty much ignore that you have a
disease the entire time. Cherish this time! You have energy, you can do things,
you have it all and soon this will go away so please please take
advantage of it.
Okay kiddo brace
yourself. When you get into your twenties you finally know all about your
disease and what can potentially happen but you always think "that won't
happen to me, mine isn't that bad." Well, it's not that bad yet!
Your last semester of college you start to get the symptoms you've become
familiar with. Bloating, pain, and diarrhea return but you are positive that it
wont last long because that is how it's always been. So every night you go to
bed you tell yourself that you're sure it will be gone in the morning. Sadly
babycakes this does not happen. Instead of it being better the next day it gets
worse, and it gets worse and worse until you're sure you're going to die.
You're going to start going to the bathroom up to 30 times a day and at one
point you count going to the bathroom 52 times in a day. You will experience
the worst pain you've ever felt, lots of blood loss, high fevers, immobilizing
arthritis, weight loss, and so much more and no medication that you take will
stop this. If you're not near a bathroom you could have accidents, and
sometimes you do. They really embarrass you and so you start to isolate
yourself. You skip classes and end up failing the semester, you stop hanging
out with your friends, and eventually you're so sick that you have to move back
home with mom and dad. Life is bad and you're all alone in this and everyone is
scared for you.
I know this all
sounds bad but it gets worse I'm afraid. You go into the hospital and you're
there for six months! During that time you have two surgeries. Little girl, I'm
not going to tell you anymore about this time because I am certain it will
scare you but I also want you to experience it without knowing what happens. I
will tell you that it will be the most difficult thing you're ever going to go
through in your entire life. I also want you to know that after this it doesn't
get better, you keep having complications for years after your surgeries and
more hospitalizations and you end up finding out that you don't have ulcerative
colitis after all but you have Crohn's disease. I could tell you a lot of
things that could potentially help you get through this a lot more easily but I
don't want to. Not because I don't love you, but because I do. All of these
struggles are going to turn out to be a huge blessing for you and if you don't
go through them you won't become the person that you are meant to be.
Now here is where I
get to tell you the good news. You matter! You end up making a difference in
peoples lives because of all that you've gone through. You have to go through
these things to turn into the person you become, the person who is writing you
this letter. You will share your story with thousands of people and become somewhat
of a role model to other people living with your disease. You do this not
because you want to be a role model or well known, but because you truly care
about those people and want to make a difference in their lives. This is what
makes you feel like everything was all worth it in the end. It turns out that
you end up being a huge advocate for your disease and you have no problem
talking all about it to anyone and everyone. Crazy right? Sara, you are going
to have this disease the rest of your life. You will take medications, you will
have more hospitalizations, and you will go through so many things for the rest
of time. It's not always going to be easy but I can tell you that you are
strong enough to get through all of this. Just as you are a little girl right
now being strong in the hospital and being brave while you get your shots and
IV's you will be strong and brave the rest of your life. There will be times
where you will think that you can't make it, that you don't even want to make
it, but do not give up. I am writing you this right now to tell you that you
are okay. In fact, you're better than okay. So tiny dancer, chin up! I assure
you that you are happy and proud to be who you are. This disease is going to
knock you down over and over again but what you can't see is that it's also
going to turn out to be one of the biggest blessings in your life.
Love,
Yourself.
P.S. Not all doctors
know what they are talking about.
P.S.S. Dark colored
underwear and clothes are your best friends.
P.S.S.S. You look
better with age. ;)
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