In the world of healthcare, storytelling has become an integral tool for communication, advocacy, and education. This becomes even more crucial in the realm of rare diseases, where each family’s journey is unique and laden with profound insights and experiences. Our recent podcast episode features Krystle Schofield, a Common Language Digital Storytelling facilitator, who offers an inspiring narrative of her own journey and the transformative power of digital storytelling in the rare disease community.
As a parent to a child with a rare disease, Krystle brings a deeply personal perspective to her work. Her initial journey from documentary family photography to digital storytelling was motivated by a need to process her own experiences and share them in a creative and meaningful way. Krystle’s first digital story, a poignant recounting of her transition into the world of rare disease parenthood, exemplifies the cathartic potential of storytelling. The story provided her with a platform to share her experiences, feelings, and insights in a manner that was both empowering and therapeutic.
The process of creating a digital story involves an intricate dance between words and images. Krystle and other storytellers often start with a free-writing exercise to unearth the core of their narratives. Images then serve to emphasize and illuminate these narratives, offering visual metaphors and powerful snapshots of lived experiences. One of Krystle’s most impactful collaborations was with Amelie, an adolescent living with 22Q deletion syndrome. The digital story they created together, From the Heart, captured Amelie’s journey, striking a delicate balance between her life as a competitive gymnast and her experiences with her rare disease.
Beyond the personal catharsis and creative expression it offers, digital storytelling also carries the potential to be a unifying tool for the rare disease community. The narratives it fosters bridge the gaps between different perspectives, shedding light on the experiences of caregivers, patients, and healthcare providers alike. Krystle shares a profound instance of this during a screening event organized by the Rare Disease Foundation, where a diverse range of stories was shared, creating a rich tapestry of shared experiences and unique journeys.
A crucial part of the digital storytelling process is the ethical framework it adheres to. This includes the idea of ‘storyteller readiness’, respecting the storyteller’s timeline for sharing their experiences, and the concept of ‘continuing consent’, which ensures that the storyteller’s comfort and consent are respected throughout the sharing process. Sue Robin’s essay, The Making of Big Love, beautifully describes Sue’s experience of creating a digital story with Krystle.
Krystle’s experiences, both personal and professional, underscore the transformative power of digital storytelling in the rare disease community. Whether it’s providing a platform for self-expression, facilitating catharsis, fostering understanding, or building connections within the community, digital storytelling emerges as a potent tool. It carries the potential to not only shed light on the lived experiences of rare disease families but also catalyze transformative change within the healthcare landscape. As Krystle eloquently puts it, digital storytelling allows for an exploration of the “commonalities in digital storytelling”, bringing people together and reducing the feelings of isolation that are often associated with the rare disease journey.
“We know that rare disease families often feel isolated. I would like to run a workshop with a group of rare disease families, both caregivers and patients. I see a lot of potential to use digital storytelling as a tool to bring the rare disease community together and that for our family, that was something that was incredibly important as we entered into our experience with our daughter. ”
~ Krystle Schofield
About Our Guest
Krystle Schofield is a digital storytelling facilitator and photographer based in Victoria, British Columbia. Through her own experience as a rare disease mom, she knows that digital storytelling can be a positive and connecting experience for both the storytellers and audience. She knows that sharing the reason we show up in ourselves and our work will invite others to do the same. Krystle works with individuals and values-based organizations to create authentic imagery and tell impactful stories.
About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.
Life is made up of meaningful moments—which ones do you want to share?
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Unveiling the Impact of a Story Screening: A Deep Dive into Digital Storytelling – Leading Through Stories
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- Enhancing Storyteller Wellbeing: Digital Storytelling with Mike Lang