This month marks the third anniversary of my column, “The MS Wire.” After writing two columns a week for most of those 156 weeks, it isn’t always easy to come up with fresh ideas. Tonight was one of those nights. With my deadline approaching, my well of ideas was bone dry. I was about to inform my editor that there would be no Tuesday column this week when 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 (MS) groups on Facebook, where there is a lot of negativity and venting. An obvious reason is that these groups are a good source of ideas for this column. But I have two others that are more important.
I know a thing or two
Many of the people who join MS-related social media groups have been newly diagnosed or 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.
This column will be published on my 71st birthday. I will have lived with MS for 39 of those 71 years. I worked full-time for most of those four decades of disease. My wife and I raised a wonderful son, and we have two amazing grandchildren. (Forgive this parent’s overuse of adjectives.) I’ve traveled to most of the 50 states and more than 15 countries. Yes, MS can be a terrible disease. But I owe it to those “newbies” to tell them that although MS treats us all differently, it’s still possible to live a very good life.
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 knowledgeable. Just as I call on my personal experiences to explain what it’s like to live with MS, I use my background as a journalist to provide well-researched facts about our illness and links to my source material. Sometimes, I’ll share an opinion or two to encourage informed discussion. I feel obligated to do what I do. And I enjoy it. That’s why I’m at my keyboard tonight and how I “keep a positive attitude with advocacy.”
You’re invited to visit my personal blog at www.themswire.com.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.