World IBD Day 2019: Making the Invisible Visible

Two people talking with chat bubbles above their heads

Many Canadians live with Crohn’s or colitis, but there are still so many others who aren’t aware of the devastating pain and disruption that these diseases cause.
This World IBD Day, we want to help start conversations around Crohn’s and colitis. The more we talk about these invisible illnesses, the more people will understand what it’s like living with them—and when there is understanding, the world becomes a kinder place. 

Whether you’ve been living with Crohn’s or colitis for years, or are just learning about them today, this page is here to help you begin these conversations and learn about inflammatory bowel disease.

Start the Conversation
If you are someone who is just beginning to learn about these diseases, please do not pressure anyone to speak about their experience—make sure they are comfortable with it first. Crohn’s and colitis affect everyone differently, and while we certainly encourage being open about each unique journey, being able to do so is a process. 

Special thanks to Perry Cornell, Jack Kerr, Emma Moore, and Sherry Pang for sharing their personal experiences and advice with us!

How can you start a conversation and educate others/yourself about Crohn’s and colitis?

  • Perry: I have learned a great deal at the education events organized by Crohn’s and Colitis Canada volunteers and staff, and I try to educate people on the diseases based on my own perspective and knowledge.
  • Jack: After gauging how interested someone is in learning, I adjust the length of my explanation. Using layman’s terms and leveraging my personal experience helps put the disease into context more effectively. For example, instead of saying “ulcerative colitis is an autoimmune disease that results in symptoms such as abdominal cramps, fatigue, bleeding, diarrhea, etc.” it may be more effective to say something like “ulcerative colitis is a disease where my immune system is attacking my colon and this results in myself having bloody diarrhea multiple times a day.”
  • Emma: Along with sharing facts and research about IBD from reliable sources, I initiate conversations by sharing personal testimonies to create a true and relatable understanding about what day-to-day life is like for someone living with Crohn’s or colitis.
  • Sherry: Whether it’s a tweet about my day-to-day life with Crohn’s (like treatments, bloodwork, and endless tests) or a Facebook post about research news, I use social media to educate others.

In which situations can you start these conversations?

  • Perry: Attempting to “bring the disease out of the bathroom” at work gets people thinking about Crohn’s and colitis, and they would often approach me to ask questions and seek information.
  • Jack: Due to the nature of the disease, group events can be a little uncomfortable. Typically, I find one-to-one conversations to be more intimate and effective.
  • Emma: Social media is such a powerful platform that lets us start conversations about IBD, whether it’s by sharing stories or asking questions, with people all over the world.
  • Sherry: Social gatherings with food involved! There is always something I avoid eating and if anyone comments on it, I’ll start the conversation. People are generally interested to learn more because they might already have a friend or relative who doesn’t talk about it and they want to help them.

For those living with Crohn’s and colitis, how do you respond to “you don’t look sick”?

  • Perry: I am very open with the disease and the effects it has had on my body, so I would highlight some of my personal battles with Crohn’s to educate others about the very real impact on those who live with it.
  • Jack: This is a great chance to educate. When someone says this, they likely don’t mean malice—they are probably genuinely curious as to why you don’t look sick. I would let them know I have IBD, ask if they know what that is, then have a nice educational conversation from there. If they are just saying that to be difficult, then I just take it on the chin and find someone else to have a conversation with.
  • Emma: For me, this is an opportunity to educate others by giving a behind the scenes look at the steps I take to ensure the disease doesn’t impact my ability to take part in activities, hang out with friends or attend school.
  • Sherry: I usually say “thanks,” because I think they genuinely mean it as a compliment. But then I’ll tell them Crohn’s is an invisible disease—if they could only see me “inside-out,” they would see the damage.

Did you know? Facts about IBD

  • 600 to 650 children under the age of 16 are diagnosed every year
  • Approximately 1 out of 160 seniors in Canada are living with IBD
  • There are currently 270,000 Canadians living with IBD

To learn more about how Crohn’s and colitis affect Canadians, check out our Impact of IBD in Canada Report.

Other Resources
Do you want to learn more about Crohn’s and colitis? 

Does your child live with one of these chronic illnesses? 

  • Talking to your child’s teacher(s) can help make their daily lives a little bit easier. Our Teacher’s Guide can help start the conversation.
  • We also have a Parents’ Guide to help you navigate the IBD landscape.
  • Our partner Solutions for Kids in Pain (SKIP) aims to increase the knowledge around children’s pain management, bridging the gap between current treatment practices and available evidence‐based solutions for children’s pain in Canadian health institutions.

Get Involved
Do you want to make a difference in the lives of the 270,000 Canadians living with IBD? It’s not too late to sign up for our largest annual community fundraiser, the Gutsy Walk

If you are a business owner, you can help make your community a friendlier place by signing onto our GoHere Washroom Access Program and opening your doors to individuals living with Crohn’s or colitis.

We’re also always looking for volunteers to help out with our events and programs, and eternally grateful for the generous donations of the people who support our mission.

  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 140 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

Other Areas of Interest