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"?