“What are you studying?” It’s a question that most students are asked within seconds of sharing that they are a student. When I say “health in social science” I am often met with a nod that says I have no idea or questions seeking clarification on what sounds like, admittedly, both a very broad and very ambiguous subject. Often, people ask me what specifically I’m studying, or what my thesis is, and that’s when I reveal that I am studying something taboo…it’s poop! Well, it’s bowel incontinence.
Usually I’m more than happy to share as much as people want to know, but there have been times where I’ve been more resistant, for example on a first date. But that’s precisely the problem, I often remind myself. Due to the disgust associated with feces and the societal expectations of managing our bodily functions after a certain age, bowel incontinence is deeply stigmatized and my instinct to avoid the subject is indicative of that. Bowel incontinence is often regarded, or portrayed in the media, as gross or humorous, with little to no thought given for the feelings of those who actually experience it on a regular basis. Many people who live with bowel incontinence endure isolation, loneliness, shame, anxiety, and depression. Some consider suicide. Other stigmatized conditions such as mental health disorders or HIV/AIDS have become less stigmatized through increased discussion and education, some of which has happened through formal initiatives funded by non-profits and government organizations. My hope is that bowel incontinence, too, will become less stigmatized by increasing awareness of its prevalence and what it’s like to live with it.
Sometimes the responses of other people remind me why researching a stigmatized condition is important. I’ve had people wrinkle their noses or make “jokes”. When I posted my recruitment flyer in a Facebook group, somebody tagged their friend and said, “don’t you struggle with this?” with a laughing face emoji. Even just the term “bowel incontinence” garnered a “please, not while we’re eating” during dinner once.
But just the same, the more positive responses I receive when telling people about my topic have been validating. Many people have revealed to me that they themselves, or someone they are close to, are living with bowel incontinence. Simply by mentioning my topic, I am normalizing that there are many people living with this condition and drawing attention to the fact that living with bowel incontinence has a significant impact on a person’s life.
I’ve learned a few things along the way that have helped me to discuss my research and help people understand why it’s important.
Self-Reflection
If you’re researching something that is taboo or stigmatized, understanding your own assumptions and beliefs about the subject is as good a place to start as any. For me, this has meant being mindful of the thoughts and feelings that come up for me when speaking about my research. Initially, I assumed that the topic of bowel incontinence would always be met with disgust. I would avoid going into too much detail about what I’m researching, or I’d find myself bracing for negative feedback and preparing a rebuttal in my head. I worried about what people would think about me for choosing to research bowel incontinence in a program where I could research just about anything. Reflecting on these feelings was actually quite empowering, as I quickly reached the conclusion that, as with many stigmatized conditions, speaking about it helps to destigmatize it.
Acknowledge That It’s Stigmatized
I’ve found that sometimes acknowledging that bowel incontinence is a bit of an unusual topic is a great way to segue into the fact that it’s necessary to research it. I’ve often used humor to start a conversation about my research because that’s been a good way to demonstrate that it’s okay to speak about it, even if it doesn’t feel natural to do so. Of course, I would never make a joke at the expense of the people who live with bowel incontinence but it’s been useful to say something like “not many people want to talk about their poop!” when explaining why recruitment has been slow or why there isn’t a lot of existing qualitative data on living with bowel incontinence.
Using the Right Language
Technically, I’m researching the experiences of people living with faecal incontinence. But I’ve learned that for many people, participants included, “bowel incontinence” is a more palatable term than faecal incontinence, anal incontinence, or mention of leakage. Because people often feel uncomfortable discussing faeces and toilet habits, I want to use language that helps them to feel more comfortable. I made this change to the headline of my recruitment flyer because not only does this matter when my research comes up in casual conversation, but, crucially, it matters to the people who participate in my interviews and their comfort is of the utmost importance.
I also use the words stigma and stigmatized a lot. Saying, “I’m researching a stigmatized health condition” before sharing that it’s bowel incontinence, helps to transition into a conversation about why this research is important. It sets the tone about the importance of the subject and sends a subtle signal that influences the way they respond: stigmatization is bad, do not stigmatize.
Since beginning my PhD, I have grown very comfortable discussing my topic and advocating for my research. Speaking to people at parties, in taxis, in line at the airport, and everywhere in between has largely been a positive experience. As I said before, sometimes speaking about bowel incontinence is the simplest way of destigmatizing it. These conversations have affirmed what I’ve read about the prevalence of bowel incontinence, and the fact that many people are hesitant to disclose it. But perhaps most importantly, these conversations have indicated to me that people are capable of understanding the impact of living with bowel incontinence. When they paused to consider it, most people I’ve spoken to demonstrate empathy and compassion toward those who live with this condition. Could that mean that, as a society, we could move toward making incontinence less of a taboo? Sounds like more research is needed to me.
