The subject of writing to heal has been discussed in many circles of folks interested in the trend of social media and patients, including blogs, Facebook, Twitter, message boards, and communities such as ours here on Health Central.
Communities are not a new phenomenon. In fact, I remember being part of a list-serve during graduate school which brought together french horn players and teachers from all over the country and the world. Some communities continue to exist in list-serve (email group) formats. Similar MS-related groups on Yahoo! still thrive.
When I first had optic neuritis in 2000. The first goal was to gain information regarding multiple sclerosis and neuromyelitis optica (Devic’s Disease) which was a possibility for me. Devic’s Disease can be devastating and is considered by some as a more aggressive form of MS, although it is now known that that are distinctly different.
Where did I go for information? The internet, of course.
When I was in the process of getting the official MS diagnosis many years later, what did I do? I went to the internet, researched treatment options, and lurked (mostly) on an MS forum called MS Watch.
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.Read this post in its entirety:
MS Can Take a Hike!!