Creating a Future Without Crohn’s Disease or Ulcerative Colitis Stigma

^{Camp Oasis Volunteers are helping to build an inclusive community where campers can talk openly about living with Crohn's disease and ulcerative colitis.}

Breaking the Silence Around IBD: An Often-Invisible Illness 

For many people living with inflammatory bowel disease (IBD), the emotional impact of the disease can be just as difficult as physical symptoms.  

Feelings of shame, fear of judgment, or hesitation to talk openly about bowel symptoms can leave people feeling isolated and alone. Often people with Crohn’s disease or ulcerative colitis face both internal shame and external stigma, like a lack of bathroom access or options for food if they have specific dietary needs, and even disbelief from others. 

“Living with Crohn’s disease has changed my life in ways I never expected: I’m met with skepticism about whether I’m actually sick. That stigma and the isolation that comes with an invisible illness fuel my determination to speak up for myself and for others,” said Gabby C.

Reducing stigma around IBD is an important part of improving quality of life for those living with or caring for someone with the disease—and the Foundation is making measurable progress as part of our 2025–2028 strategic plan. Through our programs, peer support, and awareness efforts, the Foundation helps people feel less embarrassed and more comfortable talking about their condition. 

Why Addressing Stigma Matters in the IBD Community 

Stigma can affect how people see themselves, how comfortable they feel seeking support, and whether they openly discuss their condition with others. It can also have an impact on mental health, relationships, school, work, and overall well-being. 

“Stigma can be a precursor to mental health issues and interfere with self-managing of the disease,” noted Dr. Laurie Keefer, GI Psychologist and Director of Psychobehavioral Research within the Division of Gastroenterology at Mount Sinai and Foundation methodology consultant team member. “If you're embarrassed to talk to your doctor, then you're not getting the care you need, and you're settling for symptoms that you don't need to settle for.” 

Camp Oasis: Helping Youth Feel Seen and Supported 

One of the clearest examples of stigma reduction can be seen through Camp Oasis, the Foundation’s summer camp for children and teens living with IBD. 

Data from 2025 surveys showed that: 

• Campers were 48% less likely to feel embarrassed about having IBD after attending camp.
• Returning campers were also 31% less likely to feel embarrassed about their disease than first-time campers 

That sense of community and understanding can help build confidence that lasts long after camp ends. A camper shared: 

“Camp Oasis is my home away from home. I can talk to practically anyone about things that have impacted me with my IBD and feel listened to and not judged.” 

IBD Support Groups: Creating Community and Connection 

Foundation support groups create spaces where people can share experiences openly and honestly—normalizing conversations around IBD and reducing feelings of shame or isolation. 

“Community becomes really important when you're facing a challenge,” Dr. Laurie Keefer shared. “Community is nice to have when life is going well, but it’s essential when things are not going so well. That's because connection, whether that's an emotional bond or sharing a laugh, releases hormones that buffer you against the impact of stress.” 

According to a 2025 Foundation survey, as a result of attending a Foundation support group: 

• 90% of respondents said they felt less embarrassed about having IBD
• 96% said they talked more often with family or friends about their condition  

These conversations can have a ripple effect, helping people feel more comfortable advocating for themselves and sharing their experiences beyond the support group setting. 

Changing the Conversation Around Invisible Illness 

In addition to peer support programs, public awareness efforts also play a role in reducing stigma. In 2024, the Foundation launched the Let’s Go There social media campaign to encourage honest conversations about IBD experiences and help normalize topics that can be difficult to discuss. 

Among people who recalled seeing the campaign: 

• 58% said they felt less embarrassed about IBD
• 50% said they were more open about their experiences
• 44% said they talked more often with family or friends about IBD  

These findings suggest that increasing visibility and conversation around IBD can help people feel more understood and supported. 

Progress in Reducing IBD Stigma — and What’s Next 

While progress is being made, there is work still to do. Every shared story, support group discussion, camp friendship, and awareness campaign helps move us closer to a world where no one feels ashamed or alone because of their IBD. 

The Foundation is committed to continuing to educate, advocate, and support communities; fund research; and foster open conversations to create a world without stigma.