Get Involved: Jennie's Story
In so many ways, being diagnosed with Crohn's Disease seems like a lifetime ago. My IBD has acted like a time machine, whisking a wiry, wide eyed 12 year old through what has seemed like hell and back, into a hopeful 16 year old.
My diagnosis seemed to come at the worst time possible. Newly minted as the sixth grade valedictorian and thrilled about my soon to be seventh grade status, the summer of 2003 looked promising. I received a scholarship to attend a dance camp and we were going to Boston to finally see the Fourth of July fireworks and to hear the Boston Pops play. In between the excitement and thrill, I began to notice intense abdominal pain, weight loss and blood. As the summer progressed, I complained more and was soon seen in the GI clinic.
My first day of junior high, two brightly patterned bandages adorned both creases of my arms reminders of recent testing. I thought little of it and made light of it to my friends. Then, on the 23rd of September, I had my colonoscopy. Fully under and blissfully unaware of the consequences, the surgery bothered me very little. When I awoke, my parents stood over me, teary eyed and told me I had IBD. I once again thought very little of it as I had no idea what on earth that meant. Two days later, I was informed about what was to be done. I can only equate it to feeling like someone throwing a boulder at your back, it doesn't matter if they warn you, the shock and the pain are unavoidable.
Severely in denial about my apparent chronic, incurable, autoimmune disease, I stumbled home in a fog. My older brother met me at the door, gave me a hug and whispered 'Where there's a will there's a way.' No one understood what was happening.
One day, as we picked up my younger sister from elementary school, I sat in the car, windows open, feeling the heat from the September sun. I stared vacantly at the playground and began sobbing. My Mom, confused and afraid, tried to comfort but I stammered stubbornly 'I just want to come back where everything makes sense.'
I'd sit by the phone at home waiting for the doctor to call and apologize for the misdiagnosis. But the phone never rang.
So there I was, 12 years old, sick, afraid and irrevocably alone. None of my peers understood, nor did I want to tell them that I had an intestinal disease. They ignorantly watched me wither from flare ups, gain weight from the steroids, miss school and dart to the bathroom.
By the eighth grade, I was no longer afraid to tell people what was wrong with me. They still did not understand, but it was much less secretive. It was difficult to assimilate in junior high and my priorities were so different from everyone else's. They were worried about failing the French test and the next party, I was worried about the course of disease, my shaky future and the sacrifice of my life long dreams.
I had yet to find anyone to understood. And then we found the Crohn's and Colitis Foundation of Canada (CCFC). We began to meet other families who were touched by IBD and learned so much about the disease. Recently, I've been appointment to the national Youth Advisory Council (YAC) for the CCFC. I'm the youngest of 13 amazing kids across Canada who have had such an impact on me.
My battle with IBD is far from over. I have enough medications to create my own pharmacy. A few months ago, I stopped injecting chemotherapy into my thigh for the 48th time only to now take it orally. It is still a taboo in society, no one discusses bloody diarrhea over cocktails. And in a lot of ways, it's very difficult because it's invisible. There have been, and I'm sure will be, many times when I've wanted to urge people to do a scope and look my intestines for them to see that I'm not lying.
But would I change having IBD? Never. The past four years have been the best and worst of my life. I haven't been healthy for over four months since then, but the life lessons I have learned are incredible. I love the person IBD has made me. Of course there are many things that bother me about IBD- I can't eat a lot of foods, public bathroom are humiliating (the toilet paper is terrible and there is no good reading material besides the occasional graffiti), spellcheck always says that Crohn's is spelled wrong, there is so much lacking in education and awareness, the medications are expensive (both financially and taxing on my body in their implications) and so much more. Of course, it would only make sense that the possibility of a cure would be my beacon of hope. And it is to some extent, it lessens my fear of having my starch white wedding dress marinated in blood on my wedding day, of possibility seeing my children suffer from it, of being stripped of more dreams, of being told no, of being discriminated against and not understood. But ultimately, I care little for those things.
So what's the real reason I want to find a cure? For my friends, for all the wonderful, undeserving people who suffer alongside me. For anyone ever touched or who will be touched by IBD. For everyone who will suffer silently because society labels us embarrassing. I will fight for them, the soldiers with battle wounds of surgery and painful testing. I will fight for them, for the tears they've cried, the pain they've felt and the screams they screamed to deaf ears. I will fight for them, with hope, compassion, determination and empathy. I will fight for them, with a dream. I will fight for them, for their future. Will you fight with me?
Jennie is now one of our Youth Advisory Council Champions. She is an inspirational voice for high school students with IBD.