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Invisible MS: Now You See It...Now You Don't

© Pamela Martin

To casual onlookers, MS is like a magic act. One day I seem to be in serious physical distress--uncoordinated, unbalanced, shaking, and visibly weak. The next day, my "normal" appearance leaves friends commenting that I'm "walking much better" today, and that they know people who "have MS much worse" than I do.

It may be surprising for the uninitiated to learn that some of my worst days with MS are the ones where my symptoms are less visible. The severity of a case of MS cannot be easily determined by appearance alone. There are many MS symptoms that are quite debilitating, yet show very little--if any--outward indications of difficulty.

Many MS symptoms--inordinate fatigue, double vision, dizziness, pain, numbness, tingling, and burning, impaired cognitive functions, and bladder problems--are arguably just as significant as symptoms that affect the ability to walk.

Recently, a family friend who hadn't seen me in over year, commented that I was walking better, and so my MS must be improving. She went on to say that she knew of three other individuals who have MS, and that I look so much better than they do, even though I've had the disease longer.

I know that she meant absolutely no harm by her words; more likely, she intended them as encouragement. Nonetheless, her remarks left me feeling strangely angry and defensive. The unspoken subtext of her comments seemed to imply that since I look relatively well, that I must be using MS as an excuse for my absence from the workplace, or as a petition for sympathy, or that I am exaggerating my condition.

I had to bite my tongue to keep from spouting off a laundry list of all of my "invisible" symptoms. I wanted to shout out, "Try holding down a job when you feel like iron anchors are tied to your ankles, the soles of your feet are burning, your eyes are perpetually crossed, the sensation of worms are crawling up and down your leg, and your mental acuity goes on vacation without warning."

Upon reflection, I became more confused by my reaction to her statement than by the comment itself. After all, it's perfectly normal to wonder why someone who has a chronic illness appears to look just fine. It was my reaction that I began to question. Why did I feel the need to defend myself from an innocent observation and an unspoken accusation?

The National MS Society booklet, "But You Look So Good!", offers this insight:

"People with invisible symptoms must also adjust to the differences between how they feel "inside" and how the world reacts to them when they "look so good". Family members, friends, employers, even doctors may doubt the validity of invisible symptoms. When people question you often enough, you may begin to doubt your own perceptions. MS is different for every person, and it's important to learn to recognize what your MS is like."