Social Media: Providing Connections, Voices, Adventures to Many with Chronic Illness

I am in awe of social media.  

I am in awe of it in my professional life.  I have connected with colleagues all over the world who share my passion for public health, health communication, blogging, pop culture- you name it.

I am also in awe of it in my personal life.  As someone who lives with a chronic illness, I have connected with others who suffer from similar symptoms, offer support, advocate for patient rights, and recommend creative solutions to balancing work and life.

In the past month, I have been struck by several examples of how social media is transforming the lives of people with chronic illness.  Without the networks available within social media, many of these people may have been very isolated due to their conditions.

On March 11, 2013 NBC Nightly News with Brian Williams ran a story about Virtual Photo Walks.  The project's tagline is "Walk the walk for those who can't".  Using the social media platform Google+, Virtual Photo Walks enables people to become "interactive citizens" again.  They connect with smart phone enabled photographers to "travel" and see places and people that they used to see...or always wished that they could.  The news story profiled a woman with Lupus who could not travel due to her serious health condition.  She always wanted to go to Italy and with Google+ she did.  We watched World War II veterans no longer able to travel, "visit" the USS Arizona Memorial through the collaboration of photographers and Google +.  It was incredible to watch.    

On April 5, 2013 CNN Tech ran a story called "On Twitter, Roger Ebert Found a New Voice".  The story describes how Roger became an avid twitter user in 2010, years after cancer had silenced his voice.  He wrote, 

"Twitter for me performs the function of a running conversation. For someone who cannot speak, it allows a way to unload my zingers and one-liners".

As someone growing up in the 80's, I regularly watched "Siskel and Ebert and the Movies".  Keeping up with Roger through twitter and his blog "Roger Ebert's Journal" in recent years has been a seamless transition.  I felt like the show never ended.  I kept up with his running commentary and of course- his movie reviews.

Sustaining your presence in the world is important with a chronic illness.  I felt that point strongly when reading his final blog post, "A Leave of Presence".  

"What in the world is a leave of presence?  It means I am not going away".  

Please Share:

• What creative ways do you see social media being used to support those with chronic (or acute) illnesses?
• Why do you think these communication channels are so effective in "sustaining your presence"?

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