A Pop Health Book Review of “In the Kingdom of the Sick: A Social History of Chronic Illness in America”

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)

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

Blog: http://www.laurieedwardswriter.com/blog

Facebook:  http://www.facebook.com/laurieedwardswriter

Twitter:  https://twitter.com/achronicdose 

Rent The Runway Rocks Real Non-Airbrushed Models: Us!

Like many of you, I have tried ordering clothes online.  And it never goes well.  They are always too tight or too long.  They immediately make you feel bad about yourself.  And of course- it is a huge pain to have to pack it up again and mail it back.  And after all that- you still don't have anything to wear!!  Weird, right?  The clothes looked great in the pictures.

 

The frustration of online shopping is a symptom of a larger problem.  Many fashion lines are not made to fit the average woman.  Rader Programs, a group of  eating disorder treatment facilities, estimates that the average model weighs 117 pounds at 5'll and the average woman weighs 140 pounds at 5'4.  No wonder my purchases are too tight and too long!

 

However, I'm feeling optimistic about change being possible in the fashion world.  As of last week, Rent The Runway, an online service that lets users borrow current season high-fashion, has expanded their  use of real women as models on their site.  Users can upload pictures of themselves in the clothes, and include details about their height, weight, and chest size.  The site will also have the capacity to allow users to search for women of similar body type, so that they can see how the clothes actually fit.  I think this is fantastic.  Not only will it hopefully cut down on the dreaded returns, but women will see models that look like them.  It can reduce the shame and stigma that many women feel for lacking the 117 pounds at 5'll "ideal".

 

This initiative follows what I hope is a pattern of push back on pop culture for upholding women to unrealistic ideals that may lead to unhealthy body image.  For example, we are seeing opposition to magazine airbrushing.  Earlier this year, an ambitious eighth-grader put the pressure on Seventeen Magazine to review its policies on airbrushing and consider the impact it could have on young readers.  Her online petition led the magazine to sign an eight-point "Body Peace Treaty", which outlined a commitment to never change models' body or face shapes. 

 

We are seeing celebrities (especially recently!) disclosing their battles with eating disorders- often discussing the pressure they felt being in the entertainment industry.  Over the past few months, we've heard from Katie Couric, Nicole Scherzinger, and Stacy London.   Last year, Pop Health reviewed Portia De Rossi's book- Unbearable Lightness, which discussed her life-threatening eating disorder in much detail. 

 

I hope that we are continuing to see a shift.  I hope that there is less stigma in disclosing or discussing body image concerns and eating disorders.  I also hope that the public continues to make their voices heard...whether they are fighting the magazine airbrush or the high fashion gown that will look terrible on anyone under 5'10.

 

What do you think:  With the initiatives above and their predecessors (e.g., the Dove Campaign for Real Beauty)- do you see evidence of a shift in pop culture from "thin" to "real women"?  What else needs to change to keep this initiative moving forward?