Students Living With Chronic Disease
Video by Patrick Thomas
BU News Service
Letter from Jennie David, member of the Crohn’s and Colitis Foundation of America:
Being diagnosed with Crohn’s Disease at age 12 felt like failing. Any control I was beginning to gain in my preteen life vanished – I could not control what medication I was on, or better yet the very disease that often robbed me of bowel control. I was little but wanted to be big, wanted to be healthy, wanted to be normal. For 7 years I tried medications constantly, ‘failing’ each one, spending copious amounts of time in the hospital and away from school and my childhood. To live with a chronic illness as a child is to be old in a young body, suddenly foreign to your peers and sometimes even to yourself when you look in the mirror and don’t recognize the person changed by side effects and exhaustion. The chronic nature of the condition fools people into believing sick is your normal – or rather that sick is okay – and that a flare, since it’s typical, must not be as alarming or painful as the flu for an ordinary person.
I was once asked to draw a pie chart and color in how much of my life was affected by Crohn’s. I refused; pointing out that every aspect of my life is affected by my disease, but not necessarily negatively. As a result of my experiences growing up in the medical world, I want to be a pediatric psychologist for chronically ill children – I believe there is so very much we can do for kids so that things are not happening to them, but with them.
This is where organizations like the CCFA play a role. Being involved in fundraising, advocacy, and community (as a facilitator for a college student group and a Power of Two mentor), gives me a role to play, not only in my disease, but in the perception and awareness around IBD. Having and being a support for others has been instrumental in being as open about my disease as I am, and was truly the turning point for me to take control and live my life as I wanted.
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