August 26, 2015

Managing Chronic Illness – My Journey So Far

crohns ribbon

Imagine being a teenager and missing multiple days of high school in a row and not really knowing why you were going through this, or why you felt so sick?  Unfortunately, this way my experience and days turned into a week and one week turned into weeks in a row.  After falling behind in school, the district, along with my parents and I, decided the best thing to do would be home tutoring.

This cycle of missing school continued and after a year and a half of multiple tests and experimental medications, I was finally diagnosed with Crohn’s disease when I was 15 years old.  Although I should not have been relieved to be diagnosed with a chronic illness, I was.  All these months of being sick, I finally had an answer.

Thereafter, I had to deal with telling my friends why I could not be in school, why I could not go out that often, and why I was always sick.  My Crohn’s flares led to multiple hospitalizations and a lot of stress.  However, after many hospital visits and doctors’ visits we were able to find a course of treatment. While many of the treatments help your symptoms, side effects can be taxing.  At one point, I was very sick and had to begin corticosteroids.  Although they call steroids a “quick fix,” the side effects and long lasting problems were rough.  The swelling of my face was enough to make any teenager feel embarrassed and ashamed.

However, while dealing with treatments was tough, after a while, I was slowly able to get back to school.  At this point, I started to become acquainted with my “new normal.”  I began to realize who my true friends were, and who would stick by my side no matter what I was going through.

After being diagnosed, I went through stages of grief.  I denied the fact that I was sick.  I couldn’t face the reality of hearing the words “I have Crohn’s disease” come out of my mouth.  I was depressed that I couldn’t leave my house.  I was running back and forth between my bed and my bathroom.  I was angry, especially at my family, even though these were the people who would do anything for me, they became easy targets.  Lastly, facing acceptance; I had to accept the fact that this was my new way of life. Whether I liked it or not, I had to move on and could not let this disease define me.

A few years after diagnosis and out of high school, not only can I say that I am doing better, but mentally I am so much stronger.  I recently began IV infusions after the previous medication no longer had an effect on me and almost put me into liver failure.  Sitting through the infusions are both emotionally draining and a struggle to get through, but with the support of my friends and family, I have the strength to fight it all.

My biggest accomplishment has been going away to college. Three years ago if someone asked me if I was going away for college, I would not have been able to answer that question. It has been a fight to maintain my health, but I made sure to accomplish my goals.  At the beginning of my journey where diagnosis was unclear and treatment options were unknown, there were some days where I felt like I could hide away and sleep.  That is NOT an option, now or ever.  I am going to fight and I am not going to stop. There are good days where I don’t even remember I have this debilitating disease and there are bad days when I am limited to places I can go and things I can eat.

Having Crohn’s disease has taught me to value each good day and to not take anything for granted.  I am always nervous about what the future holds but I know that my doctor will do everything she can and my family will always be there to support me.