Talking About Your IBD: Let’s Go There

This Crohn’s & Colitis Awareness Week (Dec. 1–7), we’re going there—having real conversations about living with inflammatory bowel disease (IBD). Hear from people living with Crohn’s disease and ulcerative colitis, an expert shares tips on talking about IBD, and discover Crohn’s & Colitis Foundation resources to support you.

Why Talking About Life with Crohn’s Disease and Ulcerative Colitis Matters 

Liam Robertson remembers working on an oil rig in the North Sea before being diagnosed with ulcerative colitis. He struggled with symptoms like urgency and rectal bleeding. Things were so bad that he slept wrapped in a towel. Not only was he physically far from friends and family, but he felt alone in the difficulty of his experience.

Liam Robertson

After finally receiving his diagnosis, Liam felt validation: his pain was real. Yet he explained, “I kept a lot secret because I was embarrassed talking about toilet stuff and bowels. I thought I had to fight it on my own.”

Over time, however, Liam’s journey transformed. Now a Crohn’s & Colitis Foundation social media ambassador, he went from struggling alone to building an online community of thousands of people across the globe with IBD.

“It was amazing realizing how many people were suffering in silence,” he noted. “When you speak to people about your problems, it does lighten the load.”

Your Crohn’s and Colitis Stories Are Powerful 

From advocating for policies that save lives to participating in research that leads to medical breakthroughs or finding support, there are many reasons why people choose to share their experiences with IBD.

For IBD advocate and Foundation social media ambassador Kimberly Hooks, talking about her journey with ulcerative colitis is empowering. She’s been to Congress several times to speak with representatives.

Kimberly Hooks

“I feel so proud as a patient that I am using my voice,” she shared. “Advocating on Capitol Hill is rewarding. My story is changing policies and bringing real life to this fight.”

Kimberly has always been her own advocate, even before her official diagnosis. Despite struggling with severe symptoms for years such as pain and urgency, her concerns were often dismissed or minimized. Refusing to accept “nothing is wrong,” she continued to speak up for herself and push for better care. Unfortunately, when her disease stopped responding to treatment, she required emergency surgery, a life-changing moment that strengthened her commitment to advocacy. “To me, IBD looks like being your own advocate,” she said. “It means continuing to speak up for yourself even when it feels like no one is listening.”

Let’s Go There: Having Conversations About IBD 

“Opening up about IBD for the first time can feel vulnerable, so it helps to approach the conversation with intention and self-compassion,” said GI psychologist and Foundation trustee Megan Riehl, PsyD.  

It is difficult to know where to begin. The good news is you’re not alone in the process.

How to Prepare for a Conversation About IBD 

If you’re new to talking about your disease, Dr. Riehl has a few practical tips to help you get ready.

• Clarify what you want to share and why. Determine whether it’s to build understanding, ask for support, or simply be more open about what you’re going through.
• Think about how your approach might differ based on whether you’re talking with a friend, loved one, teacher, or colleague.
• Practice what you want to say ahead of time, or jot down a few key points.
• Use language that feels natural to you. It can help to borrow language from your healthcare team or others with IBD.
• Listening to patient advocates, reading blogs, or following people who share their journeys online can help you find words that resonate.

This was true for Kimberly. She found comfort in support groups for people living with IBD, like those offered by the Foundation. There was an added element of connection in being surrounded by people walking in her shoes. She found the space to be nonjudgmental and safe.

“Sometimes I would scroll through online support forums and just read,” Kimberly said. “I didn't have to say anything. And that brought comfort to me as well.”

How to Start a Conversation About IBD

If you feel prepared and ready to open up, Dr. Riehl recommends:

• Starting with a simple statement that opens the door, such as “I’ve been managing a health condition that affects my digestive system,” or “I live with Crohn’s disease/ulcerative colitis, and I’m learning how to balance it with my daily life.”  
• Choosing the time and place that’s right for you.
• Initiating the conversation when a relevant situation arises, like turning down a meal invitation or needing to take a break, can make it feel more organic.
• Testing the waters with a trusted friend or family member to build confidence.
• Sharing in small doses, when it feels right, can make each conversation a little easier.

Kimberly encourages those who are new to sharing their IBD experiences to start conversations in ways that feel natural and comfortable. “You don’t always have to lead with the hardest parts,” she noted. “You can begin by talking about how certain foods affect you or what helps you feel better day-to-day—these are all ways of normalizing the conversation.”

Why It’s Okay to Set Boundaries

“Setting healthy boundaries around what you share about your IBD is an important part of protecting your emotional well-being,” noted Dr. Riehl. “It starts with recognizing that your story belongs to you; you get to decide who knows what, when, and how much. There’s no obligation to share details that make you uncomfortable.”

That might mean sharing openly with your friends and family, while keeping things brief at work and focusing on accommodations needed to manage symptoms. Each time you share, you gain more insight on who it feels safe to speak to and how.

Dr. Riehl recommends that people have a few prepared phrases in their pocket to make it easier, such as “Thanks for asking, but I’d rather not get into details,” or “I’m managing things with my healthcare team and doing okay right now.”

“Self-compassion is key when a conversation about IBD doesn’t go as planned,” Dr. Riehl said. “Not everyone will respond with understanding, and that can feel disappointing, but it’s not a reflection of your worth or the validity of your experience. Try to speak to yourself the way you would to a friend: “It’s okay that the conversation didn’t go perfectly; sharing took courage.”

Let’s Go There: Share Your Story This Awareness Week with Confidence

IBD doesn’t look like just one thing—and that’s the point. As Liam tells his followers, “IBD looks different for everyone. It’s not one size fits all.”

This Crohn’s & Colitis Awareness Week, we invite you to go there with us—to break the silence and show the world what IBD really looks like.

Download the “Real Life with IBD Guide” to read more real stories, and share your own experience today.