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Life with Crohn’s Disease: My Story

Crohn’s disease can be a life changing diagnosis.

When I was 14 years old, my world was turned upside down. I was sitting in the doctor’s office, barely able to explain my symptoms without crying, looking to the GI for answers, for a cure. Then, she said the words “Crohn’s Disease”, and “chronic”. I was 14, so naturally I wasn’t entirely sure what any of that meant other than what I had seen on my frantic Google searches. I didn’t fully realize what was happening until I heard “chronic means that there is no cure”. My tears intensified as I clutched on to my mom for dear life as various professional figures gave me information I couldn’t absorb. It was as if I was drowning; everything around me was a blur. I’m not strong enough to live my entire life with a disease, I thought. Why is this happening to me? Will I ever feel okay again?

I could barely move most of the time, let alone go to school. When I wasn’t at the hospital, I was laying down on the couch watching TV, until I inevitably had to go to the bathroom and suffer through debilitating pain beyond anything I had ever known. Needless to say, Handy Manny and the Mickey Mouse Clubhouse became part of my daily routine, giving me a few laughs in between my many emotional breakdowns. Somehow, through the tears and failed treatments and having to take corticosteroids just to be able to function, I managed to finish my school year on time. I was determined to go to school whenever I could, even if only for an hour. Looking back I’m not sure how I did it. I think I was on autopilot.

It was odd, because even though I was living with an illness from that point forward, I often seemed okay to the outside world, if a little skinny (I had lost a lot of weight as a result of my illness). Funnily enough, one time a girl I went to school with looked me in the eyes, knowing full well my medical condition by this point, and said I was lucky to be as thin as I was. I have no words to describe the anger and sheer disbelief I felt hearing that. I know her words were well intentioned, but they were incredibly ignorant. I have had to deal with these type of comments throughout the years multiple times. People accused me of skipping gym class for fun, not understanding that it took all of my strength just to sit in a classroom, so how could I possibly run track? Not understanding that while they were in gym class I was at the hospital getting blood tests. One time, out of the blue an administrator, with the nurse’s support, accused me of using my illness as a way of getting excused for being late in the mornings, even though the school was fully aware of my condition, and had medical documentation. Somehow certain individuals in positions of power still didn’t understand that mornings were the worst time for my illness (they still are). That often times I was vomiting up until two minutes before leaving home. That I wanted nothing more than to be on time but we started school at 8:15 every morning and I’m sorry that sometimes I’m going to be 20 minutes late because I have a medical condition. I guess they call them invisible illnesses for a reason. Too often, I shrugged ignorant comments off or kept my anger to myself, sharing only with those closest to me. Not anymore. I’m done being quiet.

Read on: Life with Crohn’s Disease: My Story | Her Campus

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