Living with a chronic illness like inflammatory bowel disease (IBD) is isolating. Not only are there stigmatizing physical symptoms, but there’s an emotional toll. It’s challenging for patients to find understanding and support in their everyday lives.

In episode 184 of About IBD, I sat down with Crohn’s patient and advocate Aaron Blocker to talk about the role of online community. Aaron shares his journey in building an online support group for people with IBD, including the successes and the frustrations.

Breaking Through the Isolation

Aaron’s story begins when he was diagnosed with Crohn’s disease at the age of 17. He felt alone and misunderstood. Friends and family who didn’t live with an IBD wanted to help, but they didn’t have the firsthand experience of daily life with IBD. Many people with IBD and other chronic illnesses feel this sense of isolation. This is especially true of invisible illnesses, where people “don’t look sick” but are really struggling in silence.

Communities become important in IBD because they provide a safe, judgment-free space to share experiences, ask questions, and receive support from those who truly understand.

Advice on Finding Community:

• Seek out disease-specific groups: Look for online communities focused on IBD, Crohn’s disease, ulcerative colitis, ostomy, or j-pouch. Broader groups are also helpful, but these groups will be places where more disease-specific questions are answered.
• Share your story at your own pace: You don’t have to reveal everything about yourself or your journey all at once. Start small and see how it feels to open up. The feelings you have about it might surprise you and prompt you to either slow down or keep going.
• Remember, you’re not alone: Even though your journey is unique, you’ll often find people who have gone through similar challenges and emotions.

Building and Sustaining an Online Support Group

Aaron created the “Support Crohn’s Disease and Ulcerative Colitis” Facebook group in 2010, not to gain followers, but to connect with others and learn from their experiences. He was being authentically himself and looking for community, not trying to gain followers and validation.

Advice on authenticity:

• Think about your “why”: Before starting a group or sharing content, uncover your motivations. Are you looking for support, offering advice, or hoping to educate others?
• Focus on quality, not quantity: A small, engaged group can be more meaningful than a large, inactive one.
• Be consistent but flexible: IBD is always unpredictable. There may be times when you need to step back and then return when you’re able.

Navigating the Challenges of Sharing Online

Sharing your health journey online can be so helpful for mental health and in better understanding the condition, but it also opens the door to negative comments, judgment, and misinformation.

Aaron points out how it’s important to prepare for a range of reactions. There will almost always be some criticism, but that shouldn’t stop you from getting involved. Negative feedback often reflects more about the commenter than about you. Make sure to protect yourself in the ways that are important to you and focus on your positive impact.

Advice on realism in online communities:

• Set boundaries: Before sharing, decide how much information you’re comfortable sharing. Be aware of photos you share and any personal information that is in them.
• Pause before responding: Avoid knee-jerk reactions to negative comments. Take time to reflect and respond thoughtfully, or remember that choosing not to engage is valid.
• Combat misinformation constructively: Share accurate information and lived experiences. If you see harmful advice, correct it respectfully or refer people to trusted resources.

The Value of Peer Support and Practical Tips

One of the greatest strengths of community is in learning practical tips and coping strategies from people who have already “been there.” Aaron recalls how connecting with someone who had undergone infusions helped him feel less anxious and more prepared. Our healthcare teams provide so much necessary information, but peer support also plays a huge role in IBD.

Advice on getting peer support:

• Ask specific questions: Whether it’s about managing symptoms, preparing for procedures, or handling side effects, it helps to get advice from people with firsthand experience.
• Share what works for you: Even small tips—like hydration strategies or colonoscopy prep hacks—can be really helpful for others.
• Acknowledge the emotional side: It’s normal to feel anxious, frustrated, or overwhelmed. Sharing these feelings and supporting others when you can helps everyone feel less alone.

Balancing Advocacy, Health, and Personal Life

Aaron points out how it’s difficult to balance community involvement with his own health, family, and professional responsibilities. He points out that it’s important to prioritize self-care and understand that it’s impossible to do everything.

Advice on preserving your energy:

• Schedule breaks: Step back from community activities when you need to focus on your own health or your family.
• See how advocacy fits into your routine: It’s possible to find small pockets of time, like lunch breaks or evenings, to engage with the community.
• Be transparent: Let your community know when you need to step back. Most people will understand and appreciate your honesty. Plus, they won’t worry about you if they know you needed to step away.

Handling Mistakes and Growing as a Community Leader

Aaron shares that he has made missteps, including accidentally sharing incorrect information. Rather than trying to shut down or be defensive about criticism, he believes in owning up to honest errors and correcting them publicly. It seems counterintuitive, but this approach builds credibility.

Advice on transparency:

• Acknowledge mistakes: If you share something inaccurate, correct it and explain what you’ve learned.
• Refer to experts: Don’t be afraid to say, “I don’t know.” You can still help by directing questions to people with more expertise when appropriate.
• Encourage constructive feedback: Foster a culture where community members feel safe to ask questions and challenge misinformation with respect.

Protecting Your Mental Health in Online Communities

Being active in support groups can be emotionally draining, especially when hearing about others’ struggles. Everyone has their own relationship to hearing stories, because they can bring up complicated emotions and memories. Aaron points out how important it is to protect your mental health. This is why taking regular breaks is key.

Advice on protecting your energy:

• Limit exposure: If certain topics or conversations are affecting you negatively, mute or leave those threads. You don’t owe anyone an explanation.
• Practice self-compassion: Remind yourself that you’re doing your best and that it’s okay to step back.
• Seek professional help if needed: It’s a good idea for people with chronic illness to have a mental health treatment plan in place. If community involvement becomes overwhelming use those resources.

Expert Insights: Making the Most of IBD Communities

Aaron’s journey demonstrates the profound difference that community can make for people living with IBD. Whether you’re seeking support, offering advice, or simply looking to connect, online communities can provide practical help, emotional comfort, and a sense of belonging. By approaching community involvement with authenticity, compassion, and self-awareness, you can both benefit from and contribute to a supportive network that empowers everyone involved.

Advice on engaging with community:

• Be open, but not obligated: Share what you’re comfortable with, but don’t feel pressured to disclose everything about yourself or about your health.
• Focus on impact, not reach: Helping one person is valuable, even if your post doesn’t have the reach you’re hoping for.
• Amplify trusted voices: Share and repost content from experts and credible sources to help combat misinformation and disinformation.
• Remember, you are more than your illness: Chronic illness is a part of your life, but it doesn’t define your entire identity. Having in-person community and friendships is also important.

If you found this post helpful, consider sharing it with others who might benefit from these insights. Together, we can build stronger, more supportive communities for everyone living with IBD.