I Don't Look Like A Sick Person

You'd never know I have MS because I smile so much.

By Kelley Gusich — Written on Aug 22, 2021

Photo: Djomas / Shutterstock

When we first moved to San Diego in 2011, I met my new neurologist. After an extended examination and discussion of my disease, he said, “but you’re so smiley. It’s difficult to reconcile your MRI scans with you as you stand before me now.”

Since that time, I’ve seen the man twice a year, and the conversation about optimism (and food and exercise) is frequent. So is the ugliness of my scans, but we don’t talk about that nearly as often as we discuss my outlook.

And that’s the crux, isn’t it? Multiple sclerosis is known as “the invisible disease” because unless patients are in a wheelchair or on a walker unless their speech is slurred and they can’t remember what happened yesterday unless they are in so much pain they can’t leave their rooms, it doesn’t look like we’re sick.

If you looked at me right this minute, you’d have no idea I’ve had seizures, I’ve spent big time in a scooter and a walker, I’ve had to learn to write with my right hand because my left one stopped working — and now I’m back to my left.

And then there’s the incontinence. If I don’t monitor myself very carefully as far as water intake and plan for the amount of time I might be sans a bathroom (on the road or on the beach, for example), bad things happen.

In 2013, I peed in the corner of a parking lot because I wasn’t gonna make it to a bathroom, and I even pooped my drawers once on my way to work. Embarrassing? You betcha. But I’m still smiling because in the grand scheme of things it’s something I can also laugh at. I’m a grown woman who sometimes pees her pants. See? That’s funny.

Honestly, if you’re in constant pain, I would understand if you tuned me out right now because I have a really hard time being smiley when I’m in pain — in the usual case through normal non-MS-related back pain—but I get it. Pain changes things.

Smiling is a major key to my success.

Right now I’m sitting on a chair typing this article, and I’m kind of hungry, and my back is a little tetchy, and I have SO MUCH to do, and my two sons start school next week — in-person school even though they haven’t had their second Covid vaccinations yet.

All things I could be grouchy about. But I just smiled, only to test it out. It makes me feel different — a little more comfortable, a little more at peace, than the non-smiling me.

Try it: smile right now.

Now no smile.

Smile.

No smile.

If nothing else, I bet you might even giggle a little because you feel like such a dork making faces to no one else for no apparent reason. But it changes your demeanor, just a little, maybe. And small changes can be built on to make big ones, right?

I notice peoples’ responses to me as a smiley person are drastically different from responses to non-smilers.

At the gym in the mornings — I work out at 5 a.m. — the people who walk around and greet each other and smile at each other seem to start their days feeling much better than the straight-faced, heads forward, eyes down, beats earphones firmly pasted over both ears, seem to be. I could be wrong because I haven’t been able to converse with any of these people — they don’t make eye contact.

So I’ll talk about something I can speak to more accurately: my husband. He’s really funny, talented, smart, a great cook and athlete, and hunky to boot.

But his go-to facial expression is straight and serious. He's 6'4' and built like a brick house, and the words used to describe him — words that might be accurate in some places and in some situations, but certainly don't reflect the man in too — are words like 'scary' 'intimidating' and 'intense.'