Last week, I had the opportunity to do a Upopolis podcast takeover and got an inside look into the world of two incredible youth with Crohn’s, Meghan and Rebecca. These youth spoke so candidly about their experience living with this disease, discussing what it was like to be diagnosed, how they cope with treatments, and advice they’d give to other youth or adults.
November is Crohn’s and Colitis Awareness Month. Crohn’s and Colitis are the two main forms of inflammatory bowel disease, which is a chronic and lifelong disease that causes inflammation of the gastrointestinal (GI) tract. These conditions can cause painful and disruptive symptoms that can impact all areas of a person’s life. Throughout November, I spent a considerable amount of time researching these conditions to post information and resources on Upopolis, but truthfully, nothing could have educated me the way these two youth did!
As an intern, I’m only just beginning my future career as a child life specialist. It was incredibly valuable to listen to Meghan and Rebecca’s perspectives. Here’s what I learned most from our time together:
- The process of receiving your diagnosis can be a long one, and it can lead to a lot of mixed emotions.
The youth talked about the emotional toll they felt going from being a healthy kid to being sick all the time. They mentioned how scary this time was for them both, and how they felt the need to hide it from others.
- Never underestimate the value of having a group of people who support you and know what you’re going through.
Meghan and Rebecca discussed how they relied on family, friends, and their healthcare team to advocate for them and to help them get through tough times. They noted that when they were connected to other youth with Crohn’s (many of which they met at a camp for children and youth with chronic illnesses), they went from feeling alone to feeling supported. They made lifelong friendships with people who truly understood how they felt.
- Invisible disabilities deserve just as much recognition and validation as visible disabilities.
Both youth discussed the same theme throughout the podcast: they felt because Crohn’s is invisible, it receives less recognition than disabilities or illnesses that you can see. The youth talk about feeling misunderstood, frustrated, and tired of pretending that they’re okay.
I think a crucial first step to increasing visibility for Crohn’s and other invisible illnesses is raising awareness. This discussion with Meghan and Rebecca was so informative, and I learned so much from listening to their experiences; I can bet you will, too!
Stay tuned to our social channels to find out when this podcast goes live! To listen to our library of other available podcasts for parents and professionals, check out this link: https://upopolis.buzzsprout.com/1275395
Written by Amiah Keresturi, Upopolis Intern and candidate of the Masters in Child Life & Pediatric Psychosocial Care from McMaster University