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When the COVID-19 pandemic changed public health guidelines around traveling and gathering in person, the Girls With Guts Board of Directors “made the very difficult decision to reschedule our 2020 retreat.” Yet, with this decision came the more challenging question of managing the void it would leave. To that end, as the Girls With Guts President, Alicia Aiello explains, “we wanted to bring a piece of our community to [our members] at home.”

To ease the isolation of COVID-19, connect women with IBD and/or ostomies, and reinvigorate feelings of hope and empowerment, the Girls With Guts 2020 Virtual Summit kicked off on October 2, 2020. The Virtual Summit was a three-day online event featuring small group discussions on an array of topics like parenting, relationships, and ostomy life, presentations from experts on subjects related to IBD and/or ostomies, social events including a Netflix watch party, and giveaways.

Leveraging Tech: Connection and Participation Online

Girls with guts, like Rachel James, a member since 2014, were excited that rather than just canceling the retreat that the Board of Directors decided to go virtual. Rachel was encouraged and happy to participate online this year as “the relationship we women have together is so deep. No one in the world understands me except them.” In past years, to foster empowerment and connections among members, these events have taken place in retreat format where members gather for the weekend.

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Finding a way to stimulate members’ opportunities to connect was one of the more significant challenges to making the event successful. Luckily, with more people working and connecting online, technology has developed to allow for dynamic virtual events! Manda Barger, the Girls With Guts secretary, explained during the 2020 Virtual Summit opening, “the backbone of Girls With Guts is our community- our members and so, as usual, we will be holding small group breakout sessions this time it is going to be over zoom.” The zoom sessions allowed members to connect over shared experiences, support one another, and deepen connections.

Small-Group Sessions

Zooming over shared experience created an intensity to the virtual summit that was challenging and fulfilling. Melissa Carlson, a GWG member for six years, had previously attended in-person retreats. Melissa explains that connecting over zoom “was a bit exhausting being home and trying to dig deep, but [the board of directors and volunteers] did an amazing job, and I looked forward to each session even if it was emotional.” Not only were the small groups a great way to connect with other women who know what it is to have IBD, but also, the presentations empowered the members to engage in topics that directly impact their lives.

Learning from the Experts

This year’s summit attendees participated in lectures and panels on body confidence with Maria Luisa, yoga with Elaine O’Rourke, a Q&A from the ostomy company Hollister, and intimacy and sexuality with Dr. Nandi. Rachel noted that these presentations “introduce us to new products, ideas, info, etc. that can help us in everyday life.” This information is so empowering because it provides an education that can be lacking in everyday healthcare interactions.

Girls with guts members participated in online sharing about how these presentations helped them. For example, on Facebook, one member noted that Dr. Nandi’s participation “reminds me that doctors work for me, I need to advocate for myself and make sure I get the most out of my doctor-patient relationships.” GWGs also connected with Maria Luisa, noting that for them, her session gave them a chance to learn about body confidence and reflect. As one member commented during Maria’s panel, “being with women who get it, who understand different body challenges, etc. is super expiring and motivating.” Yoga with Elaine O’Rourke was an excellent way for GWGs to start their day, especially as Elaine understands IBD and Ostomies. One Facebook user remarked that “most yoga sessions I have tried are too intense for me. This one was great.” Collectively the expert panels empowered the attendees with valuable information and shared learning.

Stronger Together

Rachel noted that all the people who worked together, donating money and time to support Girls With Guts was remarkable. In considering how supported the GWGs are, Rachel remarked, “Look at all the people that donated money & their time for us. It’s just amazing.” During the opening meet and greet with the Girls With Guts Board of Directors, Kristen Weiss Sanders, the Director of Development, commented that “We will be having a session with Hollister tomorrow afternoon and that is because they are our event sponsor […] our longtime friends at drip drop, Calmoseptine, and Poo-Pourri, as usual, have been favoring us, so we are incredibly grateful.” Not only did these fantastic companies offer items for swag bags that attendees received, but also, Girls With Guts members and others donated products for giveaways, and companies like Sticker Mule completed the logo stickers for the swag bags. All this support showed the Girls With Guts, like Rachel, that people genuinely care about women with IBD and ostomies.

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For Melissa, the entire weekend gave her “strength, confidence, and a sense of understanding.” Like all things Girls With Guts, Melissa is not alone. Rachel noted that for her, the Virtual Summit shows her how much GWGs are supported. Rachel says that a key takeaway from the weekend was remembering that “people, especially doctors, do care.” For this writer, a new attendee at the virtual summit without any prior in-person retreat experience, the connections made, panel members’ openness to talk about challenges related to IBD, and knowing that she is genuinely not alone are critical to her feeling empowered and reinvigorated.

The Future

While it will be fantastic to get back to in-person retreats, the online space represents an exciting opportunity for future events for women with health challenges. As Manda said during the “Weekend Wrap Up Session,” “Everyone’s participation has been phenomenal […], we really built some great friendships.” These connections and friendships made the 2020 Virtual Summit a success and have left the attendees with energy and hope for the future. As Alicia said during her closing remarks, “Even in the face of a global pandemic, we were able to meet, bond, and grow together.”

 

 

• About The Author
From a small town in Vermont, Jenny is a freelance writer and researcher. When she was nine years old, she, like her father and grandmother, was diagnosed with Crohn's Disease. Jenny attended Franklin Pierce University, where she majored in Philosophy and Sociology and completed her M.S. in Human Service from Springfield College. After a proctocolectomy in her early 20s, Jenny entered a period of remission, where she learned the joy of living a full life with an ostomy. Unfortunately, this remission period ended with a severe Crohn's flare that changed her life. As she sought how to cope with this life-changing disease recurrence, Jenny was immediately drawn to Girls with Gut's mission and vision. As the Director of Communications, she is excited to be part of an organization and larger advocacy movement that ensures that no one has to navigate IBD/ostomy life alone.
Becoming a Warrior at University Life in Transition: New City, New School, and Newly Diagnosed with IBD

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