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)

Friday

15 things never to say to anyone with multiple sclerosis




Individuals living with multiple sclerosis battle all sorts of symptoms, but perhaps one of the most frustrating aspects of this serious medical condition can be the misdirected (or even unwittingly mean) comments lobbed by those who simply do not understand MS at all.

MS is a chronic, potentially progressively disabling condition affecting the central nervous system. So far, no cure exists. MS has been called an invisible disease, because it may be difficult for onlookers to perceive that a person is actually sick. What’s more, a person battling MS may seem particularly capable one day and be altogether wiped out the next. It’s unpredictable, uncanny, and unfathomable sometimes.

Perhaps that’s why many people seem to be dumbfounded, confused, or simply clueless about what to say to someone with MS. Even the most well-meaning individuals can trample the boundaries of appropriateness, leading to awkwardness, hurt, or potential ill will.

What are the worst comments folks may make, while talking with MSers?

Here are 15 things it’s better not to say to anyone with MS.

Perhaps surprisingly, people have actually come out with these zingers. Trust me on that one. I’ve heard ‘em all (or statements like them). Maybe you’ve heard some of these as well.

  1. “You were fine yesterday. I saw you biking (or climbing stairs, running, skiing, water-skiing, or whatever).”
  2. “Well, stand back. Don’t give it to me!”
  3. “You should give up diet soda (or fast food, prepared foods, gluten, red meat, or whatever).”
  4. “You just need a little exercise. That’ll take care of your stiffness, aches, and fatigue.”
  5. “Have you tried meditation (or dietary changes, herbal remedies, massage therapy, yoga, or whatever)?”
  6. “At least you don’t have cancer. Did you hear who just died from that?”
  7. “But you look so good. You don’t look sick at all.”
  8. “You have MS? My Aunt Betty’s next-door neighbor’s second cousin died from that.”
  9. “Are you taking your meds?”
  10. “You really need to get out more. Let’s go shopping (or to the amusement park, downtown, or another loud, crowded place).”
  11. “Haven’t they found a cure for MS yet?”
  12. “You should do the MS run (or bike or swim or whatever).”
  13. “I know just how you feel. I have rheumatoid arthritis (or allergies, arthritis, bunions, insomnia, or whatever).”
  14. “It’s OK. You’ll feel much better tomorrow.”
  15. “So why aren’t you in a wheelchair?”

And possibly, many of these comments apply to other invisible diseases besides MS. These might include asthma, chronic fatigue syndrome, celiac disease, Crohn’s, epilepsy, fibromyalgia, IBS, lupus, lyme disease, narcolepsy, and many more conditions which can be hard for onlookers to recognize outright.

Generally, pat answers don’t fit. Snap judgments aren’t the ticket. And unsolicited advice pretty much slams the long-time expensive medical advice, treatments, therapies, and personal effort most MSers have already invested in battling the dreaded MS MonSter. If it were that easy, we probably would already have tried it.

Compassion and understanding are key, even if the right words evade those who care.

Image/s:
 Public domain artwork

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1 comment:

  1. Informative post. I'm sure The people who say you need to get out more mean well, but every good effort has unintended consequences. Maybe we should just stick to asking how can I help?

    ReplyDelete

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