Multiple sclerosis should come with a warning label. “Caution: MS may cause presumptuousness in strangers. Use patience and wear thick skin.”
I don't recall another time in my life when so many people, particularly strangers, had so much advice to give and so much to say about my life.
Venturing out in public with the use of a cane or wheelchair is an open invitation to presumptuousness. “You really shouldn’t use your cane (walker, or wheelchair) because you’ll become too dependent on it.” Or, “I had knee surgery a few years ago so I know exactly how you feel. I didn’t give in to the pain, though, and I refused to use a cane.” Or, “You'll see, you'll be all better before you know it!”
Unfortunately, I cannot “play through” the pain in order to push my recovery. I'm not in much pain, and I will improve when... and if... my relapsing/remitting multiple sclerosis dictates. Better? Sure I will have better days, but I will not be cured. It's not going to be “all better”, despite your good intentions. Is that what they mean by "stranger danger?"
After explaining about my MS, the next presumption is usually along the lines of, “MS? Oh, I know someone with MS. She doesn't take any medications at all. She even runs and hikes!” or “My aunt had MS and it didn't bother her at all.”
Wow, that's wonderful for them, but it has little to do with me and my particular battle with this disease. MS varies so greatly from patient to patient that misconceptions about MS symptoms and its progression run rampant. There are those who sail through life with barely a blip on the radar from their MS. Then there are those who become completely disabled and unable to care for themselves... and every level in between. Never presume that one person's case of MS is the same as another.
What I hear most often these days is, “You're doing so much better than you used to!” This is based upon little, other than how I appear at a single moment in time. It might look as though I am doing better because I am no longer blindsided by MS. I have made accommodations to help me to work around symptoms. The truth is that my symptoms actually bother me more than they did a few years ago. They last longer and I don't recover as well. Fatigue, the invisible symptom, is a fearsome enemy.
“You just need a more positive attitude.”
“So you’re tired — I tossed and turned all night and I’m tired, too.”
“You need prayers, you need vitamin D, it's the diet soda, your dental fillings, your diet, etc.”
“You've got to learn to control stress.”
If you've got multiple sclerosis, you have probably heard these lines and more. After five years of explanations, I have learned to let it go... most of the time. People just want to say something comforting, without realizing that they are not at all comforting.
Dealing with presumptuousness is, I suppose, another side effect of multiple sclerosis, or any major condition. Yet one more learning experience which has taught me what NOT to say, when I don't have all the facts. When in doubt, I will simply ask, "So, how are you doing?"
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Published On: April 09, 2008