Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Saturday

You have MS? I know someone who has that.




Picture this, if you can. You summon the gumption to tell someone that you have multiple sclerosis. You wonder how that person will respond. But before you even finish revealing your MS secret, you get this:

“You have MS? I know someone who has that.”

Immediately, that person launches into a Quadrasonic and Technicolor description of how their MSer is way worse off than you are. Or that person might begin a diatribe about how their MSer is doing much better than you are.

“I know someone who has MS. He’s been in a wheelchair for 10 years.”
“I know someone who has MS. She was elected mayor of her city.”
“I know someone who has MS. He became a drug addict.”
“I know someone who has MS. She got divorced and lost her house.”
“I know someone who has MS. He is training for the Olympics.”
“I know someone who has MS. She is in a nursing home.”
“I know someone who has MS. He couldn’t get insurance, and it ruined him.”
“I knew someone who has MS. He died from it.”1

Um, none of these are exactly helpful. Why do people feel the need to surpass your sharing with a more extreme story? 



 The focus here is on MS, but these concerns transfer easily to other medical conditions.


Is it one-upsmanship or empathy?

I suppose there could be multiple reasons why someone would hijack your personal revelation about MS and take the conversation into a sideline situation.

Often, it seems people don’t really know how to react, when they learn you have a chronic, potentially disabling, and so-far incurable medical condition that causes your own body to betray itself. Perhaps they mean to be compassionate and caring, but they may feel a little awkward about how to do it. So they spill stories of family, friends, friends-of-friends, or whomever who happened to have MS.

People sometimes believe they demonstrate empathy and understanding, if they share a somewhat related story. They seem to think you will be comforted by hearing that someone somewhere faces (or faced) something even remotely close to what you face.

On the other hand, they might simply be overconfident conversationalists, who are only comfortable when they steer conversations into their own areas of familiarity (real or feigned). If they can come up with anecdotes that loosely relate to your initial share, then they might be pleased to assume you will think they are clued-in. We all know people who want to be experts on everything, don’t we?

Maybe it’s just about someone’s need to be heard. Plenty of people are uncomfortable with lapses in conversation. So, before you even finish your sentence and take a breath, they plunge in with their proverbial two cents. It’s as if leaving a little air-time is just too scary, especially when a sensitive subject is in the air.

What’s the most helpful response people can have, when you disclose that you have MS?

Certainly, that’s an individual thing. And how an MSer deals with the subject can depend largely on personal temperament, how long it’s been since the initial diagnosis, how he or she is coping with the struggles of having MS, what symptoms (and how many symptoms) are flaring, and how he or she feels at the moment.

Would you rather be allowed to elaborate further before people respond? Would you welcome questions to help you get your own story out? Would you prefer listeners simply nodded and urged you to continue? Or would you be encouraged to hear the dramatic follow-up stories people are prone to share?

Oh, and how do you feel when people shower you with financial, fitness, life skills, medical, nutritional, political, time management, or other advice after you share such a personal issue? (Yeah. Didn't think so. Me neither.)

1 People don’t generally die from MS, although they may succumb to complications of living with MS. Statistically, the life expectancy for MSers is not significantly different (estimated at approximately 6-7 years less) than that of the general population. MS tends to impact quality of life much more than length of life.

Image/s:
MS Conversation –
adapted by this user from public domain photo




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