This forum was hosted by a pharmaceutical company, but the community itself was comprised of MSers on any or no treatment. It didn’t matter. If you were interested in MS, you were welcome. That forum was shut down about a year into my diagnosis. Some of the members created a new forum, called MS Refugees, and continued to stay in touch. However, I always thought that it was a shame so much good information was lost into cyberspace when the original forum was closed.
For a long time after that, I didn’t look for other MSers online. Instead I turned to the National MS Society for information and support. Then about a year after MS Watch was closed, I started my own blog Brass and Ivory. In the previous two years, I had been through a great deal in trying to obtain MS treatment and had struggled through the American healthcare system. I wanted to talk about health policy and create a place to share the resources I had discovered during my struggles.
It wasn’t until I stumbled across a few MS bloggers that I discovered this wonderful network of people who were talking about their MS and providing support to each other. In my opinion, the blogging community was so much better than the message boards and forums that I first had participated within. So I decided to jump in and get to know folks and hopefully let them get to know me.
It is from that blog that MS Central found me and invited me to come write (blog) for them. So 15 months later, here I am. Sharing with you, learning from you, and finding a way to deal with my own ups-and-downs along this journey.
So it’s been many years now that I’ve been an internet-savvy patient. The current popular term for what I am and what we do is “e-patient.” It might sound a little gimmicky but I’ll happily call myself an e-patient.
Something I say frequently is that I hope to Educate, Encourage, and Empower through my interactions with other patients online.
What is it that you seek in your journeys through various MS communities? I’d like to hear your story.
Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.
