This is a comment from a parent in reaction to the post I wrote “We React to the New CCFA Ad Campaign” (http://keepingthingsinsideisbadformyhealth.wordpress.com/2013/01/10/we-react-to-the-new-ccfa-ad-campaign/)
I found this very interesting because while inflammatory bowel disease IS NOT JUST ABOUT THE BATHROOM, what makes living with ulcerative colitis or crohns disease so difficult is really the bathroom part of it.
What do you all think about this comment from a parent of an IBD sufferer?
My daughter asked my opinion on what I thought about this ad campaign because there seems to be a bit of controversy within the “community”. As a sufferer from ulcerative colitis for many years leading up to a permanent ostomy, she has endured endless trauma from 14 surgeries, 250 nights in the hospital, endless procedures etc… therefore, although I have not physically experienced IBD, I consider myself an expert.
What is the essence of Crohn’s and Colitis? Really think about it… it’s about having to run your life in a stressful, high anxiety manner revolving around going to the bathroom. I listened all night for years, as my daughter ran to the bathroom 10-20 times. I saw her basically stop eating because eating meant going to the bathroom. I slept every one of those 250 nights in the hospital with her and during the colitis period of her hospitalization, she woke me every 20 minutes ALL NIGHT LONG to help her get to a toilet because she had IV’s in her and she was worried about not making it in time. I’ve had to pull into dirty gas stations so she could run in. I saw her hide from her friends for years because she couldn’t talk about her “bathroom issues” or she didn’t want to be out or stay over a friends house or go to a party and that was all about the anxiety and stress of worrying about going to the bathroom. In my humble opinion, Crohn’s and Colitis is about living every second of your life in a panic about having to go to the bathroom or, even worse, not making it to the bathroom in time and that is what these ads are all about.
If you see Dennis Leary or Danny Aiello in ads for the Lustgarten Foundation which does research to find a cure for pancreatic cancer what you see is a spokesman who has a friend or a son who died from this cancer and they’re asking you for your help. The St. Jude Hospital does show child cancer patients and yes, they are bald but don’t look that sick but…you get the point. Human nature would not allow us to watch these ads if they showed patients at their worst. We all have a good idea what a cancer patient goes through but we sure don’t want to see it.
Having IBD means going through all the horrible experiences that Sarah and Marisa and thousands of others in the community go through every day. Its terrible, it’s tragic, it’s heartbreaking , it’s the f’ing worst but the Crohn’s Colitis Foundation isn’t going to put those terrible aspects of these illnesses out there. It won’t work and as Lauren points out, it will never get shown.
So, in a quirky way they have portrayed the essence of what ruins lives every day and they show, very clearly, that these illnesses don’t discriminate. Imagine being a bride in a beautiful white dress worrying about having an accident!! Imagine how hard it is growing up with it or playing sports or just plain living in a constant state of panic that you’ll shit in your clothes. That’s what they’re trying to do to raise awareness and I think, in this somewhat silly way, they have gotten to the core of life with IBD.
Nothing negates all of your suffering. No one can truly understand how hard it is to try and “be normal” unless you live it but in an effort to bring awareness and to drive people to support their foundation…I think they’ve done an ok job.