One of the most frustrating aspects of living with multiple sclerosis is the lack of general knowledge -- coupled with unsolicited advice. I'm okay with the lack of knowledge. I don't want or need everyone in the world to learn about MS. However, if you don't know the facts, maybe you should refrain from offering advice.
Why do people feel compelled to tell us about great-aunt Mildred, who went twenty years without a relapse because she gave up dairy, so we should give it a try? Maybe she was just very fortunate. Do you know for a fact that it was the dairy? If so, then all people with MS who don't eat dairy should be cured, right?
And, yes, I've heard about horrible instances of MS and I know the worst case scenario. Unless there is a point to the story, you need not remind me.
Some will tell you that you just have to exercise! Oh, if only it were that easy. They just don't seem to get the fact that sometimes, the body simply will not cooperate. You can insist that your limbs move a certain way, but if the message doesn't get through, you're just not moving.
Once I actually heard someone blame an MS patient for her troubles. “It's her own fault, she just never exercised.” Amazing.
Don't get me wrong -- exercise is necessary for good health and I highly recommend it. For those of us with MS, the more we can exercise, the stronger we will be overall -- and that's important. However, as I have discovered, it is a lot easier said than done. I have relapsing/remitting MS. At first, I was able to exercise and bounce back between relapses. In time, it became more difficult, as the relapses became more frequent. There has been a steady loss of muscle tone and strength. I still try, but as MS and age have their way, it is becoming more of a challenge. While exercise will help me in the long run, it still will not cure MS.
I've been told that the reason for my lack of strength was that I didn't drink enough and I was simply be dehydrated. I don't eat enough. I don't eat enough carbohydrates. Or not enough fruit. Is it that old “apple a day” thing? Would that make me better? Truth is I have three squares a day plus an evening snack. In fact, I have an excellent, well-balanced diet. I drink plenty of water and I like fruit.
When I say that I'm so weak that I can't walk, I don't mean that kind of weak. My blood sugar is not the problem. I mean I can't walk! As in I can't put one foot in front of the other and propel myself forward. Because I have MS and the signals are not getting through.
When talking to someone with MS, as with any medical condition, please make sure you understand the facts before you give counsel. In lieu of advice, how about simply asking, “How are you today?” and then just lend a supportive ear.
There is really no need to offer medical advice. In fact, you don't even need to talk about MS every time we meet.
Believe it or not, sometimes we like to talk about other things, too.
Published On: June 30, 2008