Ive been
spending a lot of time recently thinking about what it means to live with a
chronic illness. I have been so fortunate the past several months to be healthy
enough that I almost forget what I have been through and whats in store for my
future. Almost. That’s what its like living with a chronic disease. Tomorrow is
never promised. I have been through more in the past 8 years living with crohns
than many people will have to go through in a lifetime. But the reality is that
I am only 25, and I have the rest of my life, both the good and the bad, in
front of me. My crohns, although in the background right now, will be a shadow
following me around for the rest of my life. I walk around everyday waiting for
it to jump out and say “BOO! Im back” but I will never know when that day will
be. I have had to choose to live my life in a way in which I am not scared for
tomorrow or for that day to come, but rather to enjoy my healthy life to the
absolute fullest and be prepared for the day that the doctor tells me my crohns
is active again.
Having a
chronic illness affects so many more parts of your life than just the one area
it targets. Crohns may be a digestive disease, but it impacts so much more than
that for me. Both mentally and physically living with it is exhausting, scary,
and difficult. My crohns may have taken my colon, rectum, anus, and 9 inches of
my small intestines, but it has taken so much more from me than that. To a
person on the outside looking into my life right now, you may not guess im sick.
Yes I wear an ostomy bag under my clothes, but I also do everything any other
25 year old would do. This is a double edged sword for me because although I
look normal, I really carry around more scars than the ones visible to the eye.
People often say to me, “but you don’t look sick…”. No one understands how hard
that is to hear. Although I appreciate it, looking sick isnt the whole story,
theres much more than that under the surface. River and I have been
trying to start a family for a year and a half, it’s a scar I
carry with me inside. My crohns took away my ability to naturally start the
family I so long for. Because of all the pelvic trauma and surgeries ive
undergone, scar tissue was formed as my organs shifted to compensate for the
colon that no longer is there. This scar tissue formed around my uterus and
blocked my tubes. The point of my story is that you cant judge a book by its
cover because you never know…
My crohns, for now, has taken a backseat to my everyday life. I
spend my days doing things I love and am always grateful that I am able to do
these things. I have found myself feeling guilty for not finding the time to
update this blog as often as I want or should. When I started this blog it was
a form of therapy for me. It then quickly because a form of therapy for others.
I am proud knowing I have helped at least one person with crohns or someone
learning about crohns through my writing. I want to take a risk and turn this
blog back into its original purpose for me; therapy. I just don’t require the
same therapy as I did before. I find that my struggle with infertility is a lot
harder to put into words than my struggle with crohns. I don’t talk about it, I
don’t like talking about it, I don’t want to talk about it. But I feel that I need
to talk about it. Its such a painful and personal subject and ill keep you guys
posted on this new journey.
For now I choose to be happy. I choose to be thankful. I choose
to take every day as it comes and remember the darker days where the crohns controlled
my life. For now I choose awareness. I choose talking openly and honestly about
what I suffer from living with an invisible disease.
