What walking "In Their Shoes" taught me about living with Crohn’s or colitis
Atticus Finch, the hero of Harper Lee’s classic To Kill A Mockingbird, said, "You never really understand a person until you consider things from his point of view… Until you climb into his skin and walk around in it."
Unless you live with a chronic illness like Crohn’s disease or ulcerative colitis - the two main forms of inflammatory bowel disease (IBD) - you can never truly understand all the challenges it brings. But I recently took part in an experience called In Their Shoes that is designed to give people like me, who don’t have Crohn’s disease or ulcerative colitis, an idea of how much IBD can impact daily life.
In Their Shoes was a 30-hour simulation of life as someone with Crohn’s or colitis created by Takeda. I was assigned a profile based on the severity of my avatar’s IBD, learned what foods worsened my condition, and received prompts and challenges on my phone throughout the day and night which simulated interruptions caused by the disease, including frequent trips to the washroom.
In one scenario I received a call from an actor playing the role of a travel agent. When I asked her to book an aisle seat for me, she asked me to justify the seriousness of my disease before advising me that no aisle seats were available. She then made it difficult for me to order an in-flight meal that wouldn’t aggravate my symptoms, and informed me that if I wanted travel insurance, I’d have to pay more than I paid for my entire flight because I had a chronic disease! As frustrating as these conversations were in a simulation, they’re the sort of experiences people with Crohn’s or colitis routinely endure.
As the President and CEO of Crohn’s and Colitis Canada, it’s my job to understand the challenges faced by people living with Crohn’s or colitis. In Their Shoes let me experience some of those challenges, but I know there is no simulation that can do justice to the difficulties that these chronic diseases create. Internal bleeding, painful abdominal cramps, the overwhelming urge to use the washroom, isolation, fatigue, and anxiety – all of which can be the result of Crohn’s or colitis – simply cannot be simulated.
Many of the people I work with have Crohn’s or colitis, and many do not, but we’re united in our drive to advance research and raise awareness. Research brings us more effective treatments, and awareness lets us create more understanding so that the people taking on IBD can feel supported and know that they’re not alone.
It can be difficult to feel the weight of someone else’s illness, but as best as we can we should be thoughtful about what life looks like in someone else’s shoes. Through both empathy and action, we can enact positive change and offer help not only when it’s needed, but when it’s deserved.
Mina Mawani
President and CEO
Crohn's and Colitis Canada