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Many women with diverse backgrounds live with Inflammatory Bowel Disease (IBD) and/ or ostomies worldwide. Girls With Guts’ mission is to empower all women, which includes ensuring that everyone’s voice is heard. That is why we have launched the new Community Connections Initiative.

I was fortunate to get a preview of this initiative and meet the outstanding team behind it on Monday (January 18th) at the Girls with Guts’ kick-off Facebook Live introducing the Community Connections team. The current board members include Tina Aswani-Omprakah, Chealynn Feaster, Basma Ali, and Theodora Pestana. Led by Tina, the women of the Community Connections team all have personal experience with IBD and/or an ostomy.” (Learn more about the team here: https://girlswithguts.wpengine.com/community).

Representation Matters

Among the many themes addressed during this event was the need for more representation. While there is little visibility of IBD and ostomies in mainstream media, minorities with IBD and ostomies contend with a lack of representation within the IBD media itself. Chealynn reflected on receiving pamphlets from her doctor shortly after her Crohn’s Disease diagnosis. She began skimming through them to find someone she could relate to, but they were filled with white men and women; no one who looked like her. She quickly observed the same trend in commercials. Chealynn’s words hit home for many viewers who reacted with the heart emoji, and supportive comments recognizing the importance of representation.

Representation is significant not only because it impacts our confidence but also because it can influence the patients’ medical treatment. Tina remembers being told by a healthcare professional at a well-known clinic that they “do not have IBD in South Asia.” A viewer provided another example of racial disparities, recounting how healthcare providers often treat her differently because she is African American. The panel members all agreed that we need representation from everyone in the IBD community. Everyone can help make this happen by becoming allies.

Addressing Stigma

Stigma was another topic that touched home for everyone. There was an immediate reaction by GWGs who turned into the FB live when conversations pointed out how references about IBD on ostomies in mainstream media are almost always followed by a joke or pun. This often leaves us ashamed of ourselves or feeling unworthy. Girls with Guts has always sought to address and counter stigma, but as we expand, we are seeking a more hands-on approach. Stigma impacts everyone differently. For some of us, the primary pressure comes from peers and society at large. For others, however, there are cultural roots to this stigma as well. Tina discussed how having an ostomy is especially challenging in South Asian culture. She was told that she would be shunned and that no one would want to marry her if she kept her ostomy.

The power of community connection

Everyone agreed that one of the most important parts of their journey to acceptance was connecting with others in the IBD community. Community Connection is here for everyone and encourages you to share your story. Accepting and speaking about the challenges posed by IBD is difficult, but no one needs to do it alone. Community Connection encourages you to share your story if you are comfortable. You can include your name or keep it anonymous. Everyone is welcome to contact the committee at communications@girlswithguts.org

 

• About The Author
Kate Shannon holds an MA in American Studies and a BA in History and American Studies. She is currently working as a high school special education teaching assistant while taking classes towards an MS in Student Disability Services in Higher Education. When she is not working, Kate loves reading, visiting history museums, practicing the clarinet (a new hobby she picked up after her diagnosis), volunteering with children and animals, and doing yoga. Kate was diagnosed with Ulcerative Colitis in 2018 and had her colon removed in 2019. She is a j-pouch patient who is extremely grateful for the new life her surgeries gave her.
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