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In 2009 I read "Life Disrupted: Getting Real about Chronic Illness in Your Twenties And Thirties". Since the book inspired me personally and professionally, I was delighted that Twitter enabled me to connect directly with the author Laurie Edwards. I was even more delighted when she asked to interview me for her new book, "In the Kingdom of the Sick: A Social History of Chronic Illness in America". Since Pop Health focuses on health communication and the coverage of public health issues in the media, we had plenty of mutual interests to discuss!
"The very nature of chronic illness- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress- is antithetical to the cult of improvement and enhancement that so permeates pop culture."
("In the Kingdom of the Sick", page 34)
("In the Kingdom of the Sick", page 34)
Early in the book, I found this quote incredibly powerful. It is true. Our society values and spotlights those that overcome adversity- those that inspire us- those that beat the odds. Before his fall from grace, we can all remember the worldwide cheering for Oscar Pistorius- making history last summer for being the first double-amputee to compete in the Olympic games. Edwards highlights those societal values in her book by drawing on the imagery found in many commercials for breast cancer research and fundraising. Those commercials show an unforgettable image, a "cancer survivor triumphantly crossing the finish line in her local fund-raising event surrounded by earnest supporters." That triumphant image is a far cry from what Edwards and colleagues term the "Tired Girls" (i.e., female patients suffering with "invisible illnesses" like fibromyalgia, chronic fatigue syndrome, and migraines). "The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better" (page 103).
The good news is that many of the "Tired Girls" (and Guys) are getting connected and getting empowered. Edwards dedicates a significant portion of her book to the discussion of "patients in the digital age." She describes the emergence of "e-patients" (those that are empowered, engaged, equipped, enabled) and how they are using technology to actively participate in the development of their care plans, connect with patients with similar diagnoses, give voice to their experiences, advocate for policy change, and debate controversial topics like vaccinations.
As a public health professional with significant interest in health communication, I was fascinated by a recurring theme that Edwards highlights from these conversations among empowered patients and writers:
"How does language influence the illness experience?"
The reader is led through an intriguing discussion of the use and implications of terms such as:
- Illness vs. Disease
- Illness vs. Chronic Condition
- Illness vs. Disability
- Military Metaphors (e.g., "the battle against disease")
- Chronic Pain Patient vs. Patient with Chronic Pain
- Healthy Disabled vs. Unhealthy Disabled
- Patient (does it connote passivity?)
"In the Kingdom of the Sick" is a fascinating read for anyone with a personal and/or professional connection to chronic illness. It begins by giving you a strong foundation in the history of illness, research, and patient advocacy movements. It then challenges you to consider the impact of advances in patient rights, science, communication, and technology on the incidence, treatment, and perception of chronic illness. I highly recommend this book to my Pop Health readers, friends, and colleagues.
If you are interested in connecting with Laurie Edwards:
Website: http://www.laurieedwardswriter.com
Twitter: https://twitter.com/achronicdose
Very interesting and engaging! I know my next book will be Laurie Edwards! I work in health communications and find the mention of semantics and the word choices we use have a serious implication on fear, recovery and much more spot on. Thanks for the post - will be reading more!
ReplyDeleteI'll definitely seek this book out. It reminds me a quote from Virginia Woolf that I just read a couple of days ago: “Consider how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down in the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentist's arm-chair and confuse his "Rinse the mouth-rinse the mouth" with the greeting of the Deity stooping from the floor of Heaven to welcome us - when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature”
ReplyDeleteVirginia Woolf, On Being Ill
I read "Life Disrupted" several years ago. Even though I am older, I found it insightful personally and professionally as well. 20 years ago I took a graduate course called "Sociology of Health". It was fascinating to discuss the difference in terms of "illness" v. "sickness" and how they might be applied by society as well as cultural and gender issues in illness and health. The emergence of e-patients, telehealth/telemedicine and its impact on all of us as consumers of health care is so timely. I look forward to reading Laurie Edwards' new book!
ReplyDeletethank you for this post, the book sounds really interesting!
ReplyDeletewhenever I hear about someone battling a serious disease with courage and patience I cannot help but wonder: would I be able to be like that? And if I weren't, how guilty, insufficient and not worthy would that make me feel? I feel that sometimes, in our efforts to be positive and supportive we do not let people with chronic illnesses know that it is ok not to always be a hero. And the words we use definitely play a big role in more ways than we realise.