Online Tool for Connecting Multiple Sclerosis Patients

MAY 24, 2016
Rachel Lutz
MyCounterpane, an online gathering for the multiple sclerosis illness community, was recently featured on NBC Nightly News with Lester Holt. MyCounterpane also offers an illness community for those with mental illnesses and another for veterans.
“MyCounterpane provides a platform for those who've experienced a life event (directly or indirectly), to tell that story based on how they feel,” the website explained. “By doing so, each personal journey is broken into moments, and those moments can be easily searched. People dealing with specific issues can find the real people and emotional support they need to feel better.”
Founder Kate Milliken, a mother of two and video producer, was diagnosed with MS in the year 2006. After her diagnosis, she scoured the Internet for someone to emotionally relate to but was unable to find anyone to talk to. She calls MyCounterpane a solution to this problem.
MyCounterpane is “a living library different moments in chronic illness that you can easily access based on how you feel,” Milliken said in an introductory video.
As time went on, she began to chronicle her feelings about her illness and her daily life. She shared those videos online, NBC News explained. Many people reacted, saying that the videos made other patients feel like they weren’t alone, Milliken said.
That’s how MyCounterpane was born. Users can tag entries with a date and one of 11 moods, including happy, hopeful, determined, aware, stable, overwhelmed, guilty, angry, lonely, scared and sad. The “Moodifier” allows the patients, and other community members or caregivers, to track how they are doing.
“I was completely blown away,” Dr. Adam Kaplin of John Hopkins University said in the broadcast. “We saw an enormous increase in people’s purpose in life” when they participated in MyCounterpane.
Milliken believes that the process is cathartic and that it is keeping her own chronic illness in check. She has branched out to include other illness communities on the website, including one for mental illness and veterans.
The full piece from NBC can be viewed here.

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