For Chronically ill, Social Networks the New Lifeline
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27 March 2010
By Claire Cain Miller
Aformer model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline.
For many people, social networks are a place for idle chatter. But for people living with chronic diseases or disabilities, they play a more vital role.
“It’s literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.
People fighting chronic illnesses are more likely to blog or participate in online discussions about health problems, said a report by the Pew Internet and American Life Project and the California HealthCare Foundation.
They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.
John Linna, a pastor in Wisconsin, did not know what a blog was when his son suggested he start one after finding he needed to stay home on a ventilator. When Linna died earlier this year, people all over the web who had never met him mourned the loss.
Amy Tenderich, who has diabetes, is the community manager for Diabetic Connect social network. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”