How 5 Influencers With IBD Are Fighting Stigma

03.10.2024 17:51

Time.com

Although some health conditions are spoken about with more nuance and understanding than in the past, inflammatory bowel disease (IBD) 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.

[time-brightcove not-tgx=”true”]

Because flare-ups can involve frequent diarrhea, and severe cases may require surgical placement of an ostomy bag, IBD (which is the umbrella term for two conditions: Crohn’s disease and ulcerative colitis) can often feel embarrassing and isolating, particularly if flares happen often or if others around you—from family members to coworkers—don’t understand the extent of the disease. That’s why social media can be a boon for those with IBD, helping them connect with others and share insights, as well as offer support. Here are five influencers who are leading the way in fighting the kind of stigma associated with IBD, and creating a robust community in the process.

Addressing cultural stigma

Although getting an official diagnosis of IBD can take time as symptoms worsen, New Jersey-based Tina Aswani-Omprakash, 41, encountered an additional delay, and it wasn’t because of her gastrointestinal issues.

“My doctor said people like me, of South Asian descent, didn’t get IBD so that couldn’t be what I have,” she recalls. “Even when I told him that my dad died of colorectal cancer related to having Crohn’s, he still was unwilling to believe me or put me on medication.”

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.

“Also, I felt judged by many for having this disease,” she says. “Having UC is bad enough, but then to be blamed for it really takes a toll. Even when I needed emergency surgery, they were against it, telling me that ‘No one will marry you if you have an ostomy,’ and that this would be the end of my life.”

She turned to social media to find others with the condition, but quickly discovered that not many people were talking about the type of cultural challenges she was facing. Because she knew other South Asian people must feel the same way, she got involved with the Crohn’s & Colitis Foundation to help manage online groups, and that led to starting to share her story on social media.

“That was so hard because a lot of my family and friends said I was bringing shame onto my family, that talking about this was inappropriate,” she says. “In some ways, that drove me even more to address this stigma.” In 2021, Aswani-Omprakash also co-founded a nonprofit organization, the South Asian IBD Alliance, and it’s continuing to scale up and expand its reach. Her personal blog, OwnYourCrohns.com, has won several awards, and she speaks at numerous conferences every year about her experience as a way to inform not just those with the condition, but also health providers who might inadvertently hold biases like the first doctor she saw.

“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.”

Navigating through emotional challenges

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. Then, her occasional gastrointestinal issues intensified to the point that she sought help, and was shocked to be diagnosed with Crohn’s. Even worse, her sickness became so overwhelming that she could barely walk up a flight of stairs, much less be on camera every day.

“When I left the hospital after an acute flare, I was put on 22 pills a day,” she says. “Plus, the prednisone I was taking changed my appearance. I didn’t even want anyone taking my photo, so it felt like my lifelong dream of being on the news was gone.”

Added to that challenge, she felt utterly alone. At the time, few people on social media were talking about chronic illness, and all her friends were healthy and pursuing their careers without interruption. Hayden says it all added up to mental health challenges as well as physical issues. Then, in 2014, after stints in public relations and TV news, she realized that her love for storytelling and the lack of representation for those with IBD could drive a whole new effort. She started writing for blogs and sharing her story on social media and her own blog, LightsCameraCrohns.com, particularly her journey through motherhood. Because those with IBD often have to switch medications or even discontinue them during pregnancy, flares become such a significant concern that even those in remission will be considered to be having a high-risk pregnancy, she says.

“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.”

Hayden says she’s very vocal about all her ups and downs, because she wants others who may be going through similar circumstances to feel seen. She gets many DMs from followers who are struggling with the emotional aspect of IBD, and says she tries to be a “safe space” where they can be heard.

“I know what it’s like to have dark thoughts with this disease and its treatment,” she says. “By sharing my own difficulties, I hope other people can feel lighter, and not alone.”

Modeling body acceptance

One of the most difficult aspects of IBD is accepting the kind of physical changes that come with treatment—for example, corticosteroids are commonly used to control inflammation but can result in a rounded face that might make people taking them feel self-conscious. For those who need a procedure such as placement of an ostomy bag, that awareness can be even more acute, says Gaylyn Henderson, 40, of Atlanta.

She started experiencing symptoms of Crohn’s as a teenager in 1998, and needed an ostomy a few years later. But rather than trying to hide the bag under loose clothing, she embraced the opportunity to share her experience, and launched an Instagram account, known as GutlessAndGlamorous, 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.”

After gaining traction and followers on social media, she’s been asked to speak to groups, including a local children’s hospital where teenagers might be struggling with IBD treatment. She’s working to found a nonprofit, also called Gutless and Glamorous, focused on providing more patient education and resources about ostomies.

“When I was younger, I don’t think I would have felt so overwhelmed and on my own if I’d seen someone who looked like me modeling on the beach with an ostomy,” she says. “Now, I have the opportunity to be that person for a young girl who needs to see that and know it’s okay—that you can have a positive, beautiful life and a body that you celebrate, wherever you are in your IBD journey.”

Creating an IBD network

Like many with IBD, Kimberly Hooks spent years in and out of the hospital trying to manage the type of intense pain that can come with having ulcerative colitis. Then, she ended up having her colon removed in 2020, when COVID restrictions barred any hospital visitors during her recovery. To cope, she started both an Instagram account and a blog, KimberlyMHooks.com, and shared videos and photos from her bed.

“At first, it was just a way to deal with the emotional effects of having a chronic illness,” she says. “I was used to isolation after dealing with ulcerative colitis for 10 years. Even working in a big corporation, it just seemed like no one there could relate, so I kept it to myself. But being in the hospital alone made me want to reach out and connect.”

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.

“Representation matters,” says Hooks. “If you don’t see other people who look like you, it’s easy to feel isolated, and that affects your mental health and outlook. I knew that if I shared my story, another person of color might feel less alone. Social media is so powerful for connecting people and creating community, and this is a great example of that.”

Fighting IBD stigma from the gym

When Robert Frank, 46, of Sarasota, Florida, started having intense stomach pain in early 2021, he suspected it was food poisoning since it came on so suddenly. A colonoscopy done at the ER led to a diagnosis of ulcerative colitis, which came as a shock to him, he says. Unlike many people with IBD, who tend to have symptoms for years, Frank had no idea—and that also meant he didn’t know what might come next.

An avid bodybuilder, he started losing weight rapidly as a result of having the condition and going through treatment for it. He struggled to keep food down, and the physical changes and mental adjustment threw him into a dark place, he recalls.

“I kept thinking they must be misdiagnosing me, that I probably had cancer and it was spreading,” says Frank. “I didn’t feel in control of my body at all, which was new for me after decades of building my body in meaningful ways.”

Because he already had a TikTok following from his bodybuilding videos, he began sharing his IBD story in a series of emotional videos that included him in a hospital bed, crying and detailing his worry over what might happen next. After he got home and began going back to the gym to rebuild his health, he kept sharing videos that were honest and vulnerable, and the response was stunning, he said. At this point, he has 1.7 million followers, and many of them come for the IBD insights.

“I’ve gotten so many emails and DMs from people who have ulcerative colitis or Crohn’s, and they found me because they were looking for support or to feel less alone,” he says. “Once I started hearing from them, I realized how much stigma there is about IBD, so I encourage them to share their story, too. This disease can be hard, I’ve definitely felt that, and it’s even tougher when you feel alone.”