What Multiple Sclerosis Feels Like

Multiple sclerosis feels like…The symptoms of MS are like…Whenever we have a relapse or decline a little further, it’s like…?

Describing the indescribable reality of life with MS

These sentence-starters are so familiar. We’ve been polled by marketers, challenged to explain it to, it seems, the entire universe on any given day, and nudged into an analogy by our own minds in an effort to make sense of it all. And yet, the myriad explanations that sounded good at the time I read them by others or those I created myself always fade and leave me wanting. Why? Were the similes inadequate, the metaphors inaccurate? Not at all. I really believe all of you who have taken the time, energy and thought to describe what is ultimately indescribable have been on target, brilliant, inspired, clever, and deeply moving.

Searching for another comparison

But I keep searching for more, for another comparison, as though the real, the best, truest analogy has yet to be discovered. As I wrote that last thought, I instantly chalked it up to my writer’s temperament, always searching for the better word choice, the more accurate verb phrase. Now I surrender to the fact that I don’t know the true motive. All I know is that I have a simile I’ve never thought of before and feel compelled to share with you:

Coping with multiple sclerosis is like being in love.

Caring made us feel very vulnerable. We were afraid to lose each other and it brought out some of our worst behaviors.

Before and after love entered the picture

Before the love, my partners acted more like a friend to me and listened sympathetically when I confided my feelings, just as I did for them. When romance entered the picture, they stopped listening and became dismissive. Before the love, I felt whole, pursued my ambitions and spoke openly about myself and what I did that day, allowing my wit and humor to flow freely. When it became romantic, such expressions seemed to threaten them so I stopped talking about myself, keeping my hurt feelings and anger inside. Eventually, I confronted them about it. No matter how I approached it, whether with calm and diplomacy or screaming rage, such directness accomplished nothing but ill feelings on both sides. I never learned how to assert my whole self in a relationship.

The break-ups were ultimately amicable. Whenever we speak to each other now, we relate as friends, listening and responding with politeness, compassion, and respect. We can easily accept each other as-is when the stakes are low, living separate lives.

MS wants to be the center of attention

A relationship with multiple sclerosis makes me feel vulnerable. When I assert myself like a whole, capable, independent person, MS tugs at me, demanding I make it the center of attention. It is my nature to defer to its jealous fits by sitting inert and quiet. I placate it, giving my full attention to the parts of me that are wounded by its relentless need to be the center. It does no good for me to be angry and resentful, to scream or cajole or sulk. It can’t help itself, just as I can’t help how I am.

I can't break up with MS

Unlike my romances, there will be no breaking up with MS, amicable or otherwise. We were thrown together like a hapless bride and groom in an arranged marriage, forced to get to know each other while working out how to live together.

Even after twenty years, there’s still more I’m learning about this strange, mercurial partner I’m tethered to for life. I might criticize its faults, but I know it puts up with mine, too. I’m pretty sure it grumbles about my short legs and arms, wishing it had more muscle to make spastic, spasmy and weak. I was older when we met, too, which I’m sure was a disappointment. I’ve robbed it of decades that it could have otherwise spent wreaking havoc on the CNS of a much younger specimen.

I try to look at the bright side. Multiple sclerosis never called me out for gaining weight.

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