Hi my name is Emma, I am a 4th year student at the University of Virginia and this is my story -
The word ‘disease’ scared me. I was six years old, a gap-toothed second grader whose world flipped-upside down by more than just long division and chapter books. Little did I know back then though that the greatest challenge of my life would also become my greatest blessing.
When I returned to school after my diagnosis I didn’t really tell my peers what was going on. Partly because I was scared what they would think of me. I didn’t want to be judged or thought of as a freak in any way. The other part was because I wasn’t even sure what was going on myself. That’s the scariest thing about this disease, not knowing what is happening inside your own body. I guess in a way I was lucky to have gotten sick as young as I had. I’ve never known what it is like to be ‘normal’ (in the most general sense of the word).
This fear of being judged is something that finds its way into our lives no matter how old we are. With every great transition comes a new challenge of finding our place. I remember this feeling well when I went to an overnight orientation for college. My family had just returned from a trip over seas and something in the water triggered a flare-up. It was a miserable 2-hour car ride to school. Once I finally arrived In Charlottesville there was so much excitement and enthusiasm around campus, you could tell everyone was nervous but anxious and looking forward to being starting this new chapter of their life. I felt so sick though I couldn’t enjoy any of it.
On a good day IBD takes quite a bit of energy to get through, and on a bad day it really sucks the life out of you. I wasn’t able to be my usual outgoing self. Everyone’s first impression of me was a quiet, self-conscious, and awkward person. I asked permission to just stay in my assigned dorm room for the night. I skipped all the planned activities and sat alone in this room, in a place that wasn’t home and wasn’t mine. I didn’t know anyone and had no one to talk to. I was scared. This was supposed to be the most exciting time of my life and my health was impeding me from living it. I thought this was how it was always going to be, that maybe being away at college was not the right choice.
While my peers were out and getting to know each other I just sat, cried a little bit, and thought a lot. I couldn’t let this disease get in the way of me living my life. As awful as I might have felt physically, I would take that any day over feeling self-pity. I went to bed at 9 pm and promised myself that tomorrow would be a better day, and it was.
To be honest, I’m not sure I would have gotten to that place had it not been from the support system of Camp Oasis. By the grace of an angel in the form of a middle-aged Jewish mother named Dee I was given the opportunity to attend sleep-away camp for kids with IBD before I was of the appropriate age. Looking back, I can’t believe my parents shipped their eight year old away on a bus to the wilds of West Virginia for a week. I’m thankful that they did though. What camp gave me was the understanding that I wasn’t alone in my fight. That I wasn’t a freak. That I could be ‘normal.’ Most importantly, that my disease doesn’t own me.
When the time came to permanently move into my dorm for the semester I had quite a few flashbacks to that orientation day. As I unpacked my bags, set up my room, and talked to my roommate I recognized that this was a fresh start in my life. No one needed to know about my disease, I could just be myself; and if there came a point I was comfortable sharing with someone then that was okay.
Fast-forward two and a half years since that day. I’m rounding out my third year of college, living away from home, and preparing for a summer of studying abroad. Sounds like IBD is just a thing of the past, right? The thing about having an ‘invisible’ illness is that it makes it impossible for people to know what goes through your body on a day-to-day basis further than what you disclose on your own accord. To be honest, I don’t think anyone would even think something was wrong with me if I didn’t tell them. My disease will always be a part of me; it is what has made me who I am, but I will never let it be my identity.
My disease threw the biggest curveball though when I was twelve years old. As if having braces, acne, and dorky glasses in the midst of puberty and middle school wasn’t bad enough. After 4 blood transfusions, 3 months of an ileostomy, 2 surgeries, and 1 colon removed I was, by medical definition, ‘cured’ of Ulcerative Colitis. Granted, my disease may no longer be there but the physical and emotional scars always will be. I’m reminded everyday when I look in the mirror and see the remains of the ping-pong ball size scar on my stomach. It also reminds me that I’m not alone in my battles.
Living with IBD has taught me that life is too scary not have a sense of humor, optimism is key, everyday you wake up without pain is a gift, nothing is more important than having a strong support system of family and friends, and although there are some things that are out of our control the way we handle it always is. More than anything, my journey with Colitis has ensured me that I am not alone in both my ups and downs. I am forever tied to over a million people. You’ll never fight alone.