Tuesday, May 6, 2008

A (female) e-patient clone of you know who

While empowered patients are primarily known for being actively engaged in their own health care, that still leaves plenty of room for having Attitude with a capital A. There's power in having attitude, in the face of circumstances you didn't ask for.

Over on the e-patient blog, Susannah Fox of the Pew Internet and American Life Project has been doing a great series of interviews with e-patients. Susannah has a knack for finding stories that really teach something about participatory medicine.

Her first interview was with "Stirrup Queen" Melissa - now there is a woman with some extraordinary attitude and expressiveness, with a lot to say about the world of infertility: phenomenal resources on her blog, and a boatload of "in your face, I'm livin' my life no matter what."

The second was with Amy Tenderich of DiabetesMine, one of the first and best-known patient blogs in the world. She's been in Newsweek and all over creation, and her site too is a treasure trove of resources - the blog name is a pun, meaning both "my" and "gold mine."

The third is with yet another astounding woman,* Sheryl Stein. I urge you to to read that interview, and especially the comments, where Sheryl details her own approach to using the Internet to alter the course of her disease - or at least her experience of it.

But THEN I actually went to her blog and found out she's a WACKO. At least on some days. Look at the YouTube video in today's post.

Her attitude does NOT remind me of anyone in MY mirror.

But her blog sure looks better than mine. She's also a primary contributor to DC Urban Moms (article), a classic online community of peers helping peers.

Again, I urge you to read those interviews, including readers' comments. Each is short and together they do a great job of illustrating what all this e-empowerment / "participatory medicine" stuff is about: the world of medicine is so complex today that we patients can truly make a difference through our active participation.

*Are all the empowered patients in the world women? Where are the men with vastly rich blogs? Mine isn't vastly rich, yet! Go find one by a guy, and tell me, will ya?

1 comment:

  1. I love your blog--
    I have CF and have had 2 double lung transplants. I have written a book about life with illness and patient advocacy. I now dedicate my time to talking with patients about becoming empowered as well as talking to med, nursing, social work, psych, divinity, etc students about the patient perspective and working as a team.

    I'd love it if you would check out my site and blog...we have a lot in common!



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