The Story behind the Book: Living Well with Chronic Illness (Charnas)
Today's back story is about the book, Living Well with Chronic Illness by Joanna Charnas
From the author:
In the mid to late 1990s, I was particularly sick with Chronic Fatigue Syndrome, an illness I’d
lived with since I was nineteen. During these years, I had several run-ins with large
bureaucracies, including the Massachusetts Department of Motor Vehicles and Harvard
Community Health Plan, the largest HMO in the state. After I’d successfully obtained the
services I needed, I’d tell my father about these confrontations, carefully leaving the distress
they’d caused me out of the narrative. My father repeatedly responded, “You ought to write
about that.” I was a Social Worker for a large AIDS service organization at the time, and my
reply was always, “My experiences aren’t unique. My clients often encounter these same
problems.” We had some version of this conversation for a couple of years.
At the same time, I had an otherworldly feeling I should be writing something. I’d been praised
for my writing since I was twelve, but I had no desire to be an author. I was struggling to remain
employed due to my poor health, and I had difficulty completing my independent activities of
daily living, like doing laundry. Adding a major project to the mix was not an option. But the
thought that I ought to be writing persisted. I’d had several psychic experiences that portended
future events, so I’d learned to respect them.
Eventually, my father’s constant suggestion and my insistent instinct converged, and I began
taking notes for the book that became Living Well with Chronic Illness. Both my father and that
voice in my head were spot on. Living Well with Chronic Illness was number one in its small
category on Amazon.com, and it was an American Book Fest Best Book Awards Finalist in
2017. I’m so grateful I finally listened to my instincts and my smart father.
jc, October 2022
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Book available at 25% discount with code FF25 at msipress.com/shop.
Read excerpts and other blog posts about Joanna and her books HERE.
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