Social media can be a boon for those with inflammatory bowel disease, helping them connect with others and share insights.
lthough some health conditions are spoken about with more nuance and understanding than in the past, inflammatory bowel disease hasn’t seemed to make that list yet, even though the condition affects between 2.4 and 3.1 million people in the United States, according to the U.S. Centers for Disease Control and Prevention.
After changing her provider and finally getting the treatment she needed for her Crohn’s, Aswani-Omprakash continued to hear misperceptions, but this time they were within her own family. Several of her relatives were unhappy that she was taking medications, since there can be distrust of Western medicine within the South Asian community, she says, and they believed she could “cure” herself through diet.
“It’s really all about knowledge, because people tend to have bias and stigma around what they don’t understand,” she says. “That means the more awareness we can spread about what it’s like to have these conditions, the better.”When Natalie Hayden, 41, graduated from college in 2005, she was eager to start her career as a broadcaster, kicking off with an internship at CBS Chicago.
“It takes a lot to fight through the pain and to constantly be readjusting your life,” she says. “Becoming an advocate and sharing information, especially for those going through pregnancy, has become a source of transformation for me. I know many women with IBD who are worried that they can’t have children, but that’s simply not true.”
, in 2012. Not only does she talk about her experiences with IBD, but Henderson shares modeling photos of herself in bikinis and crop tops, which feature her ostomy bag prominently.“I wanted to address all the stigma around having an ostomy, because people have misconceptions like they’re nasty or stinky,” she says. “That can make people with an ostomy feel like they need to hide it, but I’m trying to show that it shouldn’t be a source of shame.
That was especially the case since she rarely saw Black women like herself represented in articles, patient information, or photos related to IBD. When she began using social media more often, she started building a patient community that reflected the diversity of people affected by the disease.
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