Keeping a Positive Attitude with Advocacy: Why I Write ‘The MS Wire’

Keeping a Positive Attitude with Advocacy: Why I Write ‘The MS Wire’

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.

‘Dr. Internet’

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.

Ed Tobias Editor
Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias Editor
Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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14 comments

  1. Cyndi says:

    That “gotta be positive Eddie” teacher left his mark…on you…AND the people you touch, like me, with your column. Thanks, and Happy Birthday!

  2. Thanks so much for your inspired articles for so many years! I have had MS for 32 years. During that time, I have traveled to 68 countries, started 3 businesses, had a wonderful 40+ year marriage, raised 3 great kids, and learned to deal with my MS by bringing humor to the table. I’ve been an MS Support Group leader for 10 years, sat on the regional National MS Society board for 16 years, used up two scooters and two walkers. I know too many people with MS who use their disease as an excuse for all the things they’d like to do, but just can’t. Bah! Get off your barcolounger and do what you want! It’s a good thing I don’t want to run marathons! Thanks for all you do. If you’d ever be interested in a guest column, let me know.

    • Ed Tobias says:

      Hi Mary,

      Thanks for taking the time to say thanks.

      Wow…68 countries. You sure have me beat! I love it when people share the great things they’ve done and it sounds as if you have more than enough items for a guest column. Please send me your thoughts directly to [email protected].

      Ed

  3. Annie says:

    Thank you!! As a 73 year old who has lived with MS since 1993, who also has a daughter with progressive MS, it is SO important for the newly diagnosed to know that life does NOT end with the MS diagnosis. In many ways, it has just begun👍❤️

    • Ed Tobias says:

      You couldn’t be more correct, Annie.

      FWIW, I’m in the process of writing a book that’s aimed at MS “newbies” and I hope to have it done before the end of the year. So, stay tuned!

      Ed

  4. T says:

    Thank you for your hard work and the time you spend researching to provide accurate information. You’re my torch in a very dark and lonely path and I am grateful. I’m hopeful for all of us that a cure or something to help us will be available soon. Something, anything to protect us and keep us whole.

    • Ed Tobias says:

      Thanks very much, Cindy. We’re all in this together and, as I keep saying, it’s better to learn to dance in the rain than to hide from the storm.

      Best of luck to you,

      Ed

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