When I was diagnosed with Inflammatory Bowel Disease I quickly realized there would be physical effects of the illness as well as emotional effects. What I didn't realize right away was that there would be societal effects that I would have to deal with as well.
The physical effects were obvious and while uncomfortable, painful, inconvenient, and embarrassing I eventually learned how to deal with them and cope with them - or at least I knew to expect them. It was similar for me with the emotional side effects as well. I soon realized there were going to be good days as well as bad days. Some days I would soldier through, even if the physical symptoms seemed to be winning or taking over. Other days I felt at the bottom of my emotional barrel. There were days when I wondered how I would make it through another day of unrelenting diarrhea. I often felt guilty for making my husband and step-son go through this with me, even though neither of them ever complained or blamed me - instead they were both very supportive and understanding and still are today.
The part of living with IBD that I hadn't considered at first was the societal side, or how society would react to me and my challenges. B.C. - before colitis, that is - I was a five-foot-six 120 pound relatively healthy woman. But, during the first year when bout after bout of diarrhea had taken over my life, I started losing weight. At first I lost just a few pounds, but as the weeks turned into months and months turned into a year I had lost about 24 pounds and I weighed a grossly skinny weight of only 96 pounds. So, not only didn't I feel good about myself because of the diarrhea, cramps, lack of energy, and poor diet but now I looked like a biology class skeleton. None of my size 6 clothes fit me anymore and I found myself having to buy new pants. Over my new size 2 pants I would wear bulky tops and sweaters to try and hide my icky, skinny body.
I thought I was pulling off the charade pretty well. The friend for whom I was working had commented on my weight out of concern but nobody else in the office or among my friends had ever said anything to me about it. Then I got a little dose of reality and just how cruel people can be. One afternoon, I stood in the bread aisle of my neighborhood grocery store deciding whether to buy a loaf of bread or a package of English muffins. At the other end of the aisle, two 40-ish looking women stood chatting with each other. I had finally decided on the English muffins and as I pushed my cart in their direction I heard one of the women say to the other, "People like her make me sick. Just because she's so skinny she thinks she's better than us." I stopped. I was shocked and stunned. At first I questioned if I had heard what I thought I did. But when I looked down the aisle at the women there they were staring at me and it became clear that what I thought I'd heard was true. Tears welled in my eyes and I fled the grocery store leaving my cart in the bread aisle. I sat in my car in the parking lot and cried. "Why would those women say such a terrible thing?" I wondered. "They don't even know me."
Even though this was the first time I'd heard someone say something like this unfortunately is wasn't the last. In the past ten years I can count at least four times that I've had people make rude or nasty comments, to my face, about my weight. I even found a birthday card from Carlton Cards that took a shot at "skinny b*****s." When I wrote to the company to complain about the card's content and the vulgar language I was told, in an email from a corporate representative that humor is subjective and that while I may not have found the card humorous other people may. Needless to say, I no longer buy greeting cards from Carlton Cards or their parent company American Greetings.
I realized, though, that the people who were uncomfortable with me were that way because they were ignorant of my physical illness. While I don't feel the need to tell complete strangers about my IBD I have found it helpful to share my experiences with friends, family, and co-workers. But, talking about IBD isn't as easy or socially acceptable as talking about arthritis or heart disease or even breast cancer. Talking about poop-related issues just doesn't make good dinner conversation so I simply wait for the right opportunity to bring it up. What has been surprising to me is that the more I talk about it the more comfortable even I become with the IBD. I found my sense of humor about it nearly eight years ago. One friend said she was amazed at my ability to pull a poop joke out of my hat at any given time. I soon realized that humor lightens a conversation and makes many uncomfortable situations more approachable. And, the more I can talk to people about IBD and its related symptoms the more understanding and empathetic people become around me. I become more approachable and less of a mystery.
Published On: November 19, 2007