After being diagnosed with ulcerative colitis, Victoria felt isolated and overwhelmed. She turned to social media to connect with the IBD community.
That led her to work with others in the IBD community to create #GetYourBellyOut. Their goal was to make some noise and get attention for Crohn’s disease and ulcerative colitis outside of the GI community.
Today, GetYourBellyOut is a thriving patient-led, charitable organization. Victoria has a list of projects as long as her arm to help fill the gaps that people with IBD experience between the assistance their medical team can provide and what they need on a day to day basis.
On Episode 175 of the About IBD podcast, I asked Victoria to outline some of the ways people can lean into the IBD community for support and learn how to advocate for themselves. Here are some key takeaways from our discussion.
Getting Treatment Early
One of the major problems in IBD is getting diagnosed. Most people aren’t diagnosed in a timely way, for a variety of reasons. In Victoria’s case, the symptoms were overwhelming and it took a caring healthcare professional to help her understand how testing was done and why she needed it.
Key points:
Early intervention is crucial. Delaying medical care in IBD can lead to complications. Losing weight without trying, seeing blood in the stool, and going to the bathroom an excessive amount of times every day are red flag symptoms that point to IBD. It’s important to get care as soon as possible, although we also have to acknowledge that this is difficult, and people need the right support during the process.
Managing anxiety and fear. Having a colonoscopy or other tests, especially as a young person, understandably brings up a lot of emotions. Compassionate healthcare professionals can help alleviate anxiety, especially when patients open up about their worries and concerns. The IBD community and groups like GetYourBellyOut can also play a role here in helping patients understand the process from those who have already been through it.
Emotional Impact and Seeking Support
After her diagnosis, Victoria felt isolated and overwhelmed. She looked to social media to connect with others who shared similar experiences, and found help and support in the online IBD community.
Key points:
The power of community. Most people with IBD don’t know anyone in their everyday life who lives with one of these diseases. Connecting with others who understand the challenges is a significant source of support, especially in the early days of a diagnosis. Online forums and social media groups can be valuable resources.
Open conversations. Sharing your experiences and listening to others can help avoid some of the isolation that comes with chronic illness. People with IBD can also talk to their healthcare team and ask if there are other patients or support groups that can help with the day-to-day of life with IBD.
Balancing Online and Real-Life Engagement
In the episode, Victoria recognizes the significant role social media plays in the lives of many people. She also points out how important it is to balance online engagement with real-life connections.
Key points:
Balancing engagement. Social media is a vital tool for connection in the chronic illness community. When in a flare-up, connecting with others online is a lifeline, because it’s difficult to have in-person social interactions. However, when possible, it’s important to balance social media with real-life community to create a healthy and fulfilling support network.
Broadening horizons. Having social interactions in-person can be with IBD groups, but it can also include other local community organizations. We are social beings, and finding others with similar interests is going to help round out a support system and help with overall psychological health.
How You Can Get Involved
It feels daunting to enter into a new community. Reaching out to strangers online is scary. It may help to start with groups like GetYourBellyOut, who make it a point to support IBD patients.
Key points:
Connect on social media. Follow GetYourBellyOut on social media to stay updated on their offerings and to connect with the wider IBD community. Volunteer time or donate. If you’re able and want to get more involved, consider volunteering your time or making a donation to support the organizations that align with your values.
Spread awareness. Aside from volunteering and donating, sharing resources with others both inside and outside the IBD community can help. This creates awareness and provides support for the people who don’t live with an IBD and those who are beginning their journey. You never know who will see your post and benefit from it.
Empowering the IBD Community
Victoria’s journey with ulcerative colitis and the founding of GetYourBellyOut highlight the importance of community, support, and advocacy for people living with IBD. She channeled her personal challenges into something greater, creating a more inclusive and understanding world for everyone affected by chronic illnesses. People in the IBD community can both benefit from and support this mission while on their unique journey. After being helped, it’s important to turn around and help the next person coming after you.