Welcome to Season 2 of NEVERTHELESS, PERSISTING! We're still here, we're still sick, we're still tired, and we've still got idiocracy to lament and solutions to share. In this episode, Amy shares her haiku, TIRED, and Amy and Lance discuss the never-ending quest to describe to not-sick people how it feels to be always-sick. We also talk about how people have always used stories, poetry, and other forms of creativity to help others understand experiences and conditions they themselves don't share.
TIRED
Fatigue surfaces
As helpless as to quicksand
The world carries on
Originally posted at https://substack.com/@neverthelesspersisting/note/c-91231028
EPISODE CITATIONS
https://mcpress.mayoclinic.org/living-well/what-those-with-chronic-conditions-wish-their-friends-knew/
https://press.uchicago.edu/ucp/books/book/chicago/W/bo14674212.html
Also,
Anne Karen Bakken and colleagues apply Arthur Frank's model in their 2023 analysis of 14 ME/CFS patients' narratives of "recovery"
"The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed."
Bakken, Anne K., Anne M. Mengshoel, Oddgeir Synnes and Bolle S. Elin. 2023. "Acquiring a New Understanding of Illness and Agency: A Narrative Study of Recovering from Chronic Fatigue Syndrome." International Journal of Qualitative Studies on Health and Well-being 18(1). doi: https://doi.org/10.1080/17482631.2023.2223420 .
Colleen Donnelly applies Frank’s model in her 2024 article in the journal Disability & Society to make the argument that those who are unable to turn their chronic illness stories into RESTITUTION NARRATIVES are rendered mute.
“There is a need to allow more venues for allowing stories about ongoing struggles that do not resolve rather than to silence these narratives because they don’t fit our learned, preferred tastes.”
Donnelly, Colleen. 2024. “Claiming Chaos Narrative, Emerging from Silence.” Disability & Society 39(1):1–15. doi: 10.1080/09687599.2021.1983420.
