The View From Here: Opinions from a Life With MS
When I lived in Seattle I was on a first name basis with more MS specializing doctors than Ireland has neurologists. My local chapter of the National MS Society served more people with multiple sclerosis than the total number of people living with MS in Ireland. I was the leader of three separate self-help groups for people living with MS in my community there; here I’m told there are two other people living with MS in my town… but I’ve never met them
Moving as we did to our rural town in west Kerry has forced change in the way I see my MS community. Namely, I don’t see them. I suppose this may be something akin to what older people feel as they find it more difficult to connect with friends.
Like many around the world, I am forced online to find a community of like-minded (or at least like-diagnosed) people if I am to find answers. Luckily in this digital day and information era, we can simply type a symptom, medication, problem or question about MS into our search engine of choice and, Voilà! More answers than we know what to do with… and some of them are even correct!
When I wrote my first post for the MS & Me Blog I mentioned that everyone has a lens through which we see our lives with this disease. When looking for a community online, I like to think of it as trying to find someone with whom I “share a palate” – a group of people who ‘get’ me.
Some of the places I’ve found include online communities of which I am the nominal leader, like the EverydayHealth.com Life With MS Blog. Others I’m getting to know and like are Shift.MS, various pages on Facebook, MS World and, of course, you’ve found the pages of the MS & Me Blog.
The interweb, however, can be a scary place too. Tucked in with the helpful sites and people are predators trying to sell us “cures”, unhappy people looking to drag us down with them and “internet trolls” just looking to latch onto something or someone for a joyride.
Search wisely.
I’ve listed only a few places where I’ve found helpful information and friendly people. I can only guess that you have a few as well. Please feel free to share links to the sites, blogs, and information sites you’ve found to be of help.
There are times in the life with MS that we just want someone who understands what we’re going through without requiring an hour-long explanation. When we find it tough to find someone, on-line communities might just be the ticket.
Wishing you and your family the best of health.
Cheers
Trevis
You can also follow us via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com
Add new comment