Why Crohn’s disease & ulcerative colitis awareness matters
Published: November 30, 2020
For the past nine years, December 1-7 has been observed across the United States as Crohn’s & Colitis Awareness Week. Originally designated by the passage of U.S. Senate Resolution 199, Awareness Week provides an opportunity for the inflammatory bowel disease (IBD) community to come together around a shared goal - to raise awareness and educate the public about IBD as part of our mission to achieve a future free of Crohn’s disease and ulcerative colitis.
Raising awareness and familiarity with these diseases is important for a variety of reasons. Public awareness campaigns, like Crohn’s & Colitis Awareness Week, will increase public dialogue, which helps to reduce misinformation and stigma. It also helps build broad awareness that IBD is a painful, incurable disease, even though many patients may look healthy on the surface. And importantly, increased familiarity can help people who are experiencing GI symptoms better understand when to discuss early symptoms with their doctors, which may help speed diagnosis, resulting in better outcomes.
Raising awareness is also very personal and is something that our patients and caregivers feel passionate about. So, we took to social media and asked our followers why they think that raising awareness of Crohn’s & colitis is so important. Here are a few of the responses we received:
“When I was first diagnosed 18 years ago, I was 20. The internet wasn't like it is today and I had no idea what was happening. I thought I was dying. Once diagnosed, I didn't know how to find support groups and trying to navigate college at the same time, I felt extremely isolated and lonely. I never want anyone to feel the way I did…as chronic illness sufferers we don't want pity; we just want to be heard.”
“I want people to understand that it's more than a little stomachache, and I don't want my daughter to be embarrassed about it.”
“Raising IBD awareness is important to me because those of us in the IBD community need others to come alongside us, encourage us, and cheer us on. The more we come together, the easier it is to work through the challenging times and come out stronger than ever, and the more resources we can put towards our ultimate goal of finding a cure for IBD!”
“It is the way I can use my voice for change! And if my voice inspires others to do the same, then our voices together WILL get us closer to a cure!”
“It's not something anyone wants to talk about and shouldn't be. Cases get exponentially worse because of the ‘awkwardness’ that can be associated with IBD.”
“Raising awareness for IBD is important to me because it’s not talked about enough, because people of color aren’t represented enough, and because there’s a lot of symptoms that go unnoticed until the disease progresses.”
“Because people with illness and disabilities are people too. We are too often seen as ‘other’ and that needs to end.”
“It reduces the stigma, the elephant in the room. I want people in my life to understand the hidden illness and that even though I look ok on the outside, I'm not ok on the inside.”
“Nobody should get diagnosed while on the operating table.”
“Because fighting an invisible, debilitating illness is HARD. No one should have to go through it alone. There needs to be more education and awareness for family, friends, everyone, so others might have the slightest idea of the war our bodies fight daily.”
“There is so much shame, misunderstanding, and fear associated with IBD, and many of us keep it private or secret. Raising awareness helps us build connections, find allies, and get the support we need and deserve.”
We could not agree more with these reasons as to why raising awareness of Crohn’s and colitis is so important. But we cannot do it without you, and we need to do it year-round, not just during Crohn’s & Colitis Awareness Week. We need to work together consistently to help make IBD more well-known and publicly discussed. There are so many ways we can do this – by sharing stories from members of the community, advocating for public policies that help patients better access the care they need, donating to support research to help find new treatments and cures for IBD, participating in fundraising events, and so much more.
Our voices are stronger together and, with your help, we can make a difference and help make #IBDVisible.
This year’s Crohn’s & Colitis Awareness Week campaign is made possible by support from Amgen Inc., Bristol-Myers Squibb, Eli Lilly and Company, Janssen Pharmaceuticals, Pfizer Inc., and Takeda Pharmaceuticals U.S.A., Inc.
Rebecca Kaplan is the Public Affairs and Social Media Manager for the Crohn's & Colitis Foundation and the caregiver of a Crohn's disease patient.