I’m the guy you saw today. I’m part of the community of people you saw today — the ones you had a fleeting thought about. I didn’t see your eyes on me, nor can I read your mind, but I know you were looking, and I’m pretty sure I know what you were thinking. How do I and my compatriots know? You see, we feel much of what you were likely thinking about us — thoughts like:
“He walks (talks, moves, eats, etc.) funny.”“Didn’t I see her last week out and about, and now she’s using a walker?”“I thought he was sick.”“What’s she doing using the disabled parking space?”“He’s awfully young to be ‘retired.’”“She must be faking it.”
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What It’s Like to Be on the Receiving End of These Judgments
We’ve thought and felt many of those same things as we’ve tried to get on with our lives while strapped with the heavy pack of multiple sclerosis (MS) weighing down our physical, intellectual, and emotional selves. For the most part, we’ve overcome those feelings of self-doubt, lack of self-worth, posing, and trying to be “normal” and live up to your standards of societal responsibility. We’ve worked hard just to get to the point where we can walk funny, drive ourselves to that parking space, and be a small part of the workings of the world around us. I sometimes feel like I’m a burden on my family and the society around me. We already push ourselves to live up to our former expectations of ourselves, so we really don’t need (or appreciate) you throwing your expectations and assumptions about us in our path. When we are laid low by our disease, it’s not because of a lack of will, a detriment in personal fortitude, or a desire for attention. We aren’t “battling” MS; we’re getting on with life. We aren’t “sufferers,” though we do suffer. We are fearful of what tomorrow will bring, but we don’t want to be the focus of your fear that you might “end up” like us. RELATED: How We Compensate for the Effects of MS
We Have Those Thoughts, Too (but Through a Different Lens)
We didn’t react to the looks at us or the thoughts you had about us today, but we knew they were happening. There may have been pity, or there may have been compassion. There may have been fear, or there may have been understanding. I don’t always know exactly what you’re thinking when I catch that look, but I know that you’d probably not like to share what the thought was, were I to ask. Don’t get me wrong — we do the same thing. But those of us who are on the other end of those looks tend to think differently about people we see when out and about. We think things like:
“I wonder if they have the same thing I do.”“I wonder if he needs help.”“Good for her for giving it a go!”
You see, we’ve spent so much time rooting for ourselves and our individual community to succeed (oftentimes without much in the way of external cheerleading), that when I see someone else getting out and getting on, I see me. We see us. Not in the “Oh, I hope I don’t get that bad” or “I hope she doesn’t get worse” way, but rather with a sense of appreciation and understanding as someone who is, in a way, that person. Ours is a knowing glance, a tip of the cap, a nod and a wink intended as encouragement from a fellow traveler who is in on the joke. RELATED: When MS Has You Down, Try a Little Tenderness
When You Think About Us, Please Choose Kindness
When you look at us, we know. Exactly what you are thinking, we don’t know, but we know you’re having thoughts of some kind about us when you see us. Please be kind when you do think of us, because we’re really trying to be kind to ourselves, and it’s something that has been a long, hard lesson to learn for many of us. By the way, sometimes MS does get “that bad” — but it’s not as bad as you think. Thanks for your time. Wishing you and your family the best of health. Cheers, Trevis
