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