I’ve been writing The MS Wire for about three years now and it isn’t always easy to come up with fresh subjects. The other night my “idea well” was bone dry but then I came across something that primed the pump.
In a private social media group for patient advocates, someone asked, “How do you keep a positive attitude with advocacy when dealing with chronically ill people? My main advocacy is for multiple sclerosis, and I have left FB groups for about a year because of the cattiness and constant negativity. … How do you maintain your sanity or do you just stay away?”
That post got me thinking about why I belong to several multiple sclerosis Facebook groups where there is a lot of negativity and venting. And also why I write the MS Wire. Here’s why I do both.
I know a thing or two about MS
Many of the people who join MS-related social media groups have been newly diagnosed or they think they may have MS. Some are beginning careers or starting families — or both. And they’re scared. They often use the word “petrified.” They’re facing a serious and incurable illness and they’re thinking the worst.
I celebrated my 71st birthday about a week ago. For 39 of those years I’ve lived with MS. For most of those four decades I worked full-time with MS as a companion. My wife and I raised a wonderful son, who was a little over a year old when I was diagnosed, and we have two amazing grandchildren. (Forgive this parent’s overuse of adjectives). I’ve traveled to most of the 50 states and to more than 15 countries for work and for pleasure. Sure, I have a lot of trouble walking now but I’ve done a lot of walking in my life.
Yes, MS is a terrible disease. But I owe to share with MS “newbies” the news that it doesn’t have to be the end of their world. Although MS treats us all differently, it’s still possible to live a very good life while living with MS .
“Dr. Internet” and The MS Wire
While “Dr. Internet” may be the most accessible medical source in the world, this “doctor” doesn’t always provide the best advice. I cringe every time I read a post that begins with “I think I read somewhere that… ” or “You really need to ….” There are a lot of well-meaning people posting on social media, but this doesn’t necessarily mean they’re also knowledgeable. Misinformation needs to be corrected. Just as I call on my personal experiences when writing my blog I use my background as a journalist to provide well-researched facts about our illness. Sometimes, I’ll share an opinion or two and when I do that I hope it will encourage some informed discussion.
I feel obligated to do what I do. And I enjoy it. That’s why I’m at my keyboard tonight and that’s how I “keep a positive attitude with advocacy.”
(A version of this post first appeared as my column on the MS News Today website).
(Featured image by: Free-Photos from Pixabay)
