For next week’s #patientchat, we want to talk about patient stories. We admit that part of our inspiration to want to talk about this is a recent controversy by a husband-wife journalist team against a cancer blogger, tweeter and advocate who was accused of “TMI” when writing of her cancer journey. We also are reminded that storytelling traditionally has a huge role to play in activism (the topic of last week’s #patientchat).
As one of the leading thinkers in community activism, Marshall Ganz, has said stories matter because they help us provide hope.
Hope is what allows us to deal with problems creatively. In order to deal with fear, we have to mobilize hope. Hope is one of the most precious gifts we can give each other and the people we work with to make change.
The way we talk about this is not just to go up to someone and say, “Be hopeful.” We don’t just talk about hope and other values in abstractions. We talk about them in the language of stories because stories are what enable us to communicate these values to one another.
For patient stories, they can humanize an experience. In ALS advocacy, for example:
These are not passive glimpses into their diaries with tidy “The End” pages.
These are not “Queen For A Day” stories of misery designed to raise compassion for a cause or funding.
These are vital narratives of people’s pasts that can set us on a course for change. These are people who even after their deaths put us at the corner of the past and the future with some pretty clear directions for a better path for tomorrow.
Storytelling is also part of the reason that we decided to keep this blog, to write about the journey of our company but also to feature the empowered patients that inspired us to do what we do.
Reading all this, here are a few questions we had:
- What does it mean to share your medical experience on the internet?
- Why do patients share their stories?
- How do patient stories affect others in their community?
- What do you hope for the future of patient storytelling?
See you next Friday January 24th at 1pm EST / 10am PST for #patientchat!
Latest posts by Emily Lu (see all)
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- What are you looking forward to at Stanford MedX? #medx #patientchat - September 5, 2014