Growing a community of connected rare storytellers needs support
With the Internet already a real presence for more than half of my life, it’s easy to forget that when I was diagnosed with a rare condition at the age of three–all of my parents’ access to information about Gaucher disease came directly from the various doctors I was taken to see. We had no contact with other Gaucher patients until I turned eleven, a relatively short time to wait as far as rare disease stories are concerned. We were exceedingly fortunate to find a community, years ahead of the emergence of online support communities such as today’s popular Ben’s Friends and RareConnect. Despite the privilege of having a correct diagnosis and not being isolated, as a young teenager going to patient meetings still felt more like a chore (bore). Mostly it meant listening to doctors, telling me for the umpteenth time what Gaucher disease was, using terminology I didn’t understand, and showing frightening slides of children with big bellies and blacked out eyes.
As much as I strongly resisted paying attention to the medical information being conveyed at these sessions, I did glean the personal story of the organization’s founder, a successful lawyer living with Gaucher who was willing to risk his career, by drawing attention to his rapidly deteriorating health, in order to galvanize necessary government action on access to a newly available treatment. I came to respect those families in our community who had banded together to form the National Gaucher Foundation of Canada and publicly shared their struggles and hopes with the media, which eventually made treatment accessible to many waiting patients like me. Individual stories are what molded a compelling organizational story, still being retold at community gatherings over 20 years later.
Sarah E. Kucharski @AfternoonNapper, writer and founder of FMD Chat, describes why stories matter. She explains, “Storytelling gives data meaning. Our stories are remembered because they help listeners to connect. To tell stories about our challenges and triumphs in coping with a diagnosis is simply an extension of connecting with one another.”
It certainly meant something to me, having patient stories that I could relate to, even though they did not answer my most pressing question at the time: how to start dating with a Port-a-Cath inserted in my chest. It was not until becoming a young adult that I received an invitation to share my own version of a Gaucher story. I felt vulnerable speaking for the first time to a room of patients, their families, and doctors that knew me. When a young woman approached at lunch and said that she “got” my story, it felt worth it, and this marked the beginning of my participation as a board member for the Gaucher foundation. While it took guts to play a more public role, it was still pretty unlikely to result in my friends or boss finding out about my secret rare identity. The expectations of the position were nowhere as open as today’s online sharing environment. My rare disease world didn’t extend outside Canada or beyond type 1 Gaucher.
Dedicated bloggers, such as Elaine Benton, who chronicles her experiences living with Gaucher and Parkinson’s, have broadened my perspective on the diversity of experiences within the Gaucher community. Video stories like “Little Miss Hannah” bring a face to the less common types 2 and 3 Gaucher, which previously I only recognized as a presentation chart of progressing symptoms.
What began as a search to learn about my own condition has introduced me to countless other rare diseases. Navigating the Internet I’ve moved from being a Gaucher patient to becoming a member of the global rare disease community. The key message – that collectively the rare disease experience is in fact common and that it is estimated to be lived by 350 million individuals worldwide – would still seem an unfathomable statistic without access to the true stories that bring this reality to life, in a way that was not possible before online connections.
With such a wide open storytelling opportunity, it’s not surprising that every direction one turns there are a growing number of rare disease story requests – for advocacy and fundraising campaigns, conferences, awareness days, and even pharmaceutical sponsored initiatives. Never mind that your immediate circle has come to expect real time status updates on your health. With the patient voice elevated to new standings, rare disease communicators continue to emerge from the blogging sphere to the previously guarded domain of government drug reviews. As this momentum continues to build, it can be tempting for patient organizations to simply want to add a “share button” to their website and hope that social media takes over. A more thoughtful approach to story sharing, however, may in fact better enhance opportunities for our storytellers, our individual organizations, and the broader rare disease community at both local and global levels.
For specific ideas on how to support the growing community of rare storytellers, be sure to read, “Considerations for Organizations Seeking Real-Life Stories,” first presented as a poster for the most recent European Conference on Rare Diseases. Also visit the My Normal website for storytelling tips from rare storytellers like Kucharski.
You can tweet about this RARE Daily series using the hashtag #RunningOnStories.