(This is an excerpt from Linda Kriger’s new book, Gut Feelings: Social and Emotional Struggles With Crohn’s & Colitis.)
When I told her I was a writer, she asked what I was writing. I said I was researching a book about the social and emotional impact of inflammatory bowel disease (IBD) on people under 30.
She asked why I had chosen that topic. Years earlier, I would have deflected the question with a nondescript reason to avoid answering truthfully, but I had come to grips with the fact that secrets are toxic, so, internally, I took a deep breath and replied that I had had ulcerative colitis and my entire colon had been removed and replaced with a J-pouch to substitute for my large intestine.
The next thing I knew, she disappeared. I stood there, contemplating the awkwardness of the moment. Our brief conversation highlighted one of the central issues I address in Gut Feelings: Speak about my condition and I may alienate my listener. Don’t speak about it and I stifle who I am and what I have gone through.
Issues related to inflammatory bowel disease are very real for the 5 million people worldwide and 1.6 million people in the United States with Crohn’s disease and ulcerative colitis, which comprise IBD.
If you have IBD, you may live with blood and pus in the toilet, frequent cramps, stomach and joint pain, skin eruptions, bloating, weight loss, and lethargy. You must decide how to navigate the world of seemingly healthy people. You must also formulate in each moment how much to tell people about the cause of your symptoms to minimize the risk of turning someone off, as I obviously did in that brief interaction.
Being frank about their medical condition is not an issue for young people with cancer, asthma, diabetes, or, for that matter, any other chronic disease. But talk openly, even with friends, about why you scope out bathrooms everywhere, why you avoid going outside your home for fear of having an accident in your pants, or what the real reason is behind your quitting the school soccer team, and you run the risk that the conversation will dissolve abruptly into awkward, helpless silence or, worse, pity.
Cultural Attitudes Toward Feces
Write what you know. That is the standard advice to writers. I know about being a teenager and someone in her 20s and 30s with runaway ulcerative colitis.
Although I didn’t become symptomatic until I was almost 16, I also know about living in an antagonistic relationship with defecation from my earliest years. I remained silent about it because I was a child and I didn’t know how to articulate what was going on with my gut. And also, what friend wants to hear about my severe constipation?
Secrecy and shame around defecation are such cultural norms, so ingrained in all of us, that we don’t question them or even think about them. After all, what separates humans in Western culture from other animals, in part, is that we defecate behind a closed door. What goes on in the bathroom is private and distasteful and it is never mentioned in conversation except as a spontaneous expletive.
The presence of shame and disgust about defecation in general and IBD in particular will be difficult to overcome, but to date, so many taboos have been freed from the constraints of silence, there is no reason to believe it won’t happen regarding the body’s elimination system, too.
However long that takes, the embarrassment associated with IBD must be confronted now.
That is a central aim of Gut Feelings, to tackle the destructive impact that taboos regarding IBD impose on those of us with the disease, particularly with regard to our social, psychological and emotional lives.