Wednesday, May 16, 2012

Social media for patients


In this day and age of vanishing privacy with the spread of social media, one of the biggest groups this has had an impact on is patients - those with an ailment or hundred. When the internet first came along, one of the first groups to jump online were farmers and ranchers - they could check corn futures from the isolation of their snow bound abodes. As long as they had a phone line and a dial up (remember those) modem, they could improve their own financial security.

Now us patients can bare our innermost secrets to total strangers and get support world wide from people we will probably never meet. The internet has provided us access to millions of terabytes of medical information and the latest research. Social media has allowed us to strengthen bonds with strangers and learn to advocate for those who we meet online. I get support that gets me through the medical (mis)adventures and roller coaster twists and turns. We form little democracies with virtual mayors and leaders with our avatars displaying who we are and what we care about.

As a professional patient for the last five years I think this is the one thing that has had the biggest impact on my mental well being. Instead of being isolated by my ailments, I am supported through this online. When I had my hysterectomy in 2005, someone suggested Hystersisters as a place to find information and support. Up until that time I had primarily used the internet for work, job hunting, games, sending emails, etc. But an online community? I had no idea they existed and provided so much information.

Then with cancer, I found other communities - Crazy Sexy Life and the Komen message boards, quickly followed by a million more cancer message boards, Wego Health, Facebook, Twitter, and  my latest is Pinterest. What I find humorous is that I have only been on Facebook for four years. I was already on Twitter, and several cancer message boards before then.

But social media is now something I would find difficult to live without. How else would I be able to find support when I need it?

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