For many nonprofits around the world, people's willingness to talk about their experiences with the organization represents the eternal social media dilemma.
With a bit of ingenuity, the Crohn's & Colitis Foundation found a successful way to take on that tricky issue head-on.
Though an estimated 3.1 million Americans are affected by Crohn's disease or ulcerative colitis, the stigma surrounding IBD often stifles necessary conversations, particularly on social media.
That's exactly why the foundation built the #myIBD Generator. Through a form funded through support from partners Arena Pharmaceuticals, Inc., Celgene Corporation, Eli Lilly and Company, Janssen Biotech, Inc., Pfizer, Inc., Takeda Pharmaceuticals U.S.A., Inc., and UCB, Inc., the Crohn's & Colitis Foundation prompts both patients and caretakers to fill out an eight-question survey about their experiences with IBD.
According to Rebecca Kaplan, Public Affairs and Social Media Manager for the Crohn's & Colitis Foundation, more than 6,600 infographics have been created since the foundation introduced the generator as part of their Awareness Week activities in 2017.
"Explaining what it’s like to have Crohn’s disease or ulcerative colitis can be hard," Kaplan said. "In addition to the physical symptoms, which can be taboo to talk about, there’s a lot that can’t be seen by the eye. We wanted to provide patients and caregivers with an easy and shareable way to show what it’s like to live with a chronic, debilitating inflammatory bowel disease. That’s what the infographic generator does – it allows people an easy way to show a snapshot of their disease journey, share it on social media, and help make these invisible illnesses more visible.”
(The infographic generator) allows people an easy way to show a snapshot of their disease journey, share it on social media, and help make these invisible illnesses more visible." - Rebecca Kapaan, Public Affairs and Social Media Manager for the Crohn's and Colitis Foundation
A search for the #myIBD hashtag on Twitter reveals a substantial number of anecdotes shared by patients and caretakers.
IBD is one of those silent diseases, yet almost everyone I know has someone in their life who has been touched by it. This weekend marked 5 yrs since I was released from the hospital after life-saving surgery during the worst snowstorm in decadeshttps://t.co/C2W7Wa5iUo#myIBD pic.twitter.com/rW9ZrVhYme
— Joshua Bradley (@airjoshb) December 10, 2018
"This weekend marked 5 yrs since I was release from the hospital after life-saving surgery during the worst snowstorm in decades," wrote Twitter user Joshua Bradley (@airjoshb), linking to a blog post further detailing his story of perseverance.
His #myIBD graphic explains how his life feels "incredibly small and insular" when his symptoms flare, but that he receives support from his "family and friends."
A search on Instagram for #myIBD also turns up a handful of iterations of the graphic, among the 5,800+ posts from the global IBD support network.
Joined by the hashtag community around #myIBD, Joshua's story stands with thousands of others who have also detailed their own struggles with IBD.
The Crohn's & Colitis Foundation aggregated the data collected from the survey to share insights about the results, including that the biggest toll on patients isn't necessarily physical, but emotional.
Kaplan also shared that the foundation is working on future iterations of the infographic generator, which will further benefit patients worldwide.
