PERSONAL STORIES
HARPER'S STORY
My name is Harper. I was diagnosed with ulcerative colitis in March of 2008. At first I was really scared. I was afraid of everything that had to do with the illness and treatment… swallowing pills… needles… IV's… When my doctor ordered the first blood test I broke down in tears.
My dad has IBD, and I knew he eventually had surgery the year I was born. To an 11-year old, the idea of abdominal surgery is unfathomable and terrifying. I just didn't want to accept it. I guess you could say I was in a bit of denial.
I finally got frustrated with all the medical terms the doctors and adults were using. So I started asking more questions, learned a lot about my illness, began to accept it and to deal with it as best I could.
Within 8 months we had tried just about every available medication and treatment, but nothing seemed to be working. That’s around the time my mom heard about IBDSF. This is probably going to sound like what everyone else says here, but that’s because it’s true. IBDSF made me realize that I was not the only one going through this. I was not just the freakish kid whose body and face might change from one week to the next. I was one of many, many normal kids, all over the world, living with IBD every day. When I said "I've been on Prednisone for 9 months," everyone's faces were sympathetic. I didn't have to explain what that meant. There was instant understanding. When someone in group said they just had their first Remicade treatment, I could say, "Oh that's tough, I hope it works for you" and suggest they download some classical music to their iPod for their next round (it really does help).
When things started getting serious, and we were considering the possibility of surgery, there were plenty of kids and parents at group that we could turn to for advice and support. IBDSF also connected us with other families we could talk to about surgery. Once I heard that other kids had been through the same thing, and were better off for it, I wasn't scared anymore. And every time I have been in the hospital, someone from IBDSF has been there to cheer me up with a visit, and give my parents a much-needed break.
IBDSF has given me the courage to keep going even on those really bad days. There is always another kid who is going through what you are… or worse. Yet, we can all get through it. We are not alone. And we can do anything.
