Using Online Resources to Cope with Multiple Sclerosis
"MS Can Take a HIKE!!"
Those are words I said in an unguarded moment sometime last month when I was visiting my primary doctor because of bronchitis. I was coughing up a storm, could hardly breathe due to the spasms caused by the irritation in my lungs, and was hacking up the grossest globs of opaque gunk you’ve ever seen come out of a lung.
In addition to checking up on my current state of (un)health, she asked about how my MS was going.
“MS can take a hike!” is what I replied.
I surprised myself. I hardly ever talk that way in real life, outloud to others. I like to stay calm and composed. Even under stress, such as what might be caused by being on stage in front of hundreds of people giving a lecture or performance, I have always been called “cool as a cucumber.” In fact, I actually enjoy presenting to an audience. It feels very natural to do.
Side note: cucumber soaked in vinegar with sugar and chilled in the fridge is a fantastic treat. I've gotta prepare some of that after the next grocery run.
This past summer, I had a really tough time with my MS. Either I had multiple relapses or one major relapse which lasted for many months and took several rounds of Solumedrol to subdue. The frustration of not being well and of personal setbacks put my mental health equilibrium on tilt-a-whirl. I’m still trying to get over the figurative vertigo from that ride.
One strategy, for me, in facing the uncertainty and depression has been to focus on writing about depression and mental health. I’ve done it both to add relevant material to MS Central and to help myself face the issue while being protected in the formality of the writing. Honestly, it has helped me and I hope has helped you too in some way.
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.
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.