(Josie Tao, Hong Kong)
Social Media is Fun and Games
Social media is about having fun–sharing your new photos from the junkboat trip, commenting on your besties new outfit on her profile picture. So what happens when you are not living like a rockstar and feeling more like rock bottom? How does Social Media measure up?
Vienna, a woman in her early 20s, have been in and out of the hospital for SLE (Lupus) more times than she can count on her fingers and toes combined in the past few years.
Although she is in serious conditions (an attack left her in a coma for days and in the hospital for months, recently she has had 2 epilepsy in 2 weeks), we slowly learnt that Vienna is actually one of the luckier ones with Lupus in the hospital. Only a few beds away, Jennifer* has been in a coma for 2 months after a fatal attack caused by Lupus. While another woman in the same wing is confined to isolation —her skin is so inflammed and in such poor condition it will be easily infected from airborne germs.
(Yup, LupusOrg is following LadyGaGa, who revealed she tested for Lupus just a couple weeks ago)
Finding support: Online and Offline
Vienna is the kind of woman that can make anybody laugh. Very quickly, she became the nurses’ favourite for her positive outlook and energy. One day, one of the nurses came up to her and goes, “it will be really good if you can talk to Jennifer’s mom, she is having a very difficult time dealing with all of this.”
I can tell both Vienna and Jennifer’s family find relief in talking about her disease with other families going through the same thing—but not everybody in this position is 1) quite as open or 2) get to meet other people going through the same experience. And if the ultimate goal of digital media is to connect with other people and to share your experience, how will it measure it in the time of crisis, sadness and sickness?
Can digital media Band (us) Together?
With Women between 20-50 being most at risk, it is not surprising that http://www.lupus.org developed by Lupus Foundation of America is very digital forward. While visitors may choose to donate online, the website also lists all a variety off offline donation and volunteering options. Connected to a Facebook,twitter, youtube, blog and myspace, LFA is the most interactive and informative assocation for Lupus online. The facebook page has an active discussion board while their website has a Q and A blogpost every month with Doctors that specialize in treating Lupus called “15 questions with”. Each month, visitors to their website submit questions on a specified condition of Lupus.