“ . . .  to be alive is to be in uncertainty.”

“ . . . to be alive is to be in uncertainty.”

I have just finished an amazing book:?The Invisible Kingdom, Reimagining Chronic Illness by Meghan O’Rourke. ?

A brave and gut-wrenching quest of life in an illness narrative that goes unrecognized, a health system not designed to hear, and the life-altering experience of chronic disease.

A long, and continuing, journey with an undiagnosed autoimmune disease: from a decade of uncertainty to a life forever changed. A perspective on our current health system that seeks definitive diagnosis, treatments, and cures . ?. ?. a life in an “invisible kingdom” from the injustice of not being heard.

This book instilled a sense of urgency to redesign healthcare to treat the individual and the whole being, respect their stories, and do what is right even when we don’t have all the answers. To use the best digital technology to unburden clinicians for more empathic care of patients. To build a durable model of patient interactions and storytelling for a lifetime of health and well-being.

A must-read - a compelling testimony for those seeking disruptive change to our current healthcare delivery systems.

From the Book:

“The hardest part of what I was living through was accepting the uncertainty of whether I would ever know what was wrong with me. Someday, doctors would have a name for my illness. But in the meantime, I might become one of those people lost on the way to answers, treatments, cures- lost in the knowledge gap.”

“In the absence of certainty, medical science remains unsure of what story to tell. Too often, it turns away from patients rather than listening to the long and chronic stories we tell, narratives that start and stop and double back, searching for meaning in the particular rash that broke out that day or the car accident that triggered pain or the death after which nothing was the same . . . when we suffer, we want recognition. Where science is silent, narrative creeps in”

Thanks, Meghan!

Ross Dworman, MA, BCC

Founder FlourishingSelf Coaching, Premier Fellow Coach at BetterUp

2 年

Hey, Tim, in his book “The Illness Narratives: Suffering, Healing, And The Human Condition”, Dr.Arthur Kleinman attributes this kind of failure to the medical model guiding Western medical training. While people experience illness- a disruption to a whole life embedded in a social network- Western physicians are trained to see a narrow field of disease and dysfunction, just slivers of the whole person and the whole story (aka narrative). He wrote that back in 1989 (updated in 2020). To my way of thinking, technology tends to follow clinician practice. When the mindset of Western medical training changes, then clinicians will be demanding the kinds of changes that will support a more comprehensive patient engagement.

Ben Wolfe

Sr. Director, Digital Transformation - Rush University System for Health

2 年

Thanks Tim… “a durable model of patient interactions and storytelling for a lifetime of health.” I like that.

Dale Sanders

CPO/CTO | Senior Data Strategist | Investor | Board Member | Air Force C4I Officer | NSA Nuclear Threat Management | Healthcare C-Level

2 年

Great writing, my friend. There’s no reward in our healthcare system for helping and managing patients like this. The rewards in our system come from quick diagnosis and treatment, then move on to the next.

C . Lydon Neumann, CFCHE

Vice President @ Impact Advisors | Healthcare Strategy and Implementation

2 年

Thanks for sharing, Tim. Crucial questions to explore and respond to

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