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A new outlook on MS and “You look so good!”

By Dan Digmann

By Dan Digmann

When I share the news of my MS to a new acquaintance, I regularly hear five words that many people with multiple sclerosis detest.

“But you look so good.” 

Surprising, right? I have lived with MS for nearly 22 years, but you’d never know it just by looking at me. I’m walking, have a full-time job, and am the primary caregiver for my wife, Jennifer, who has secondary progressive MS. How could I possibly have anything wrong with me much less have a chronic progressive disease of the central nervous system for which there is no cure?

I wholeheartedly reply to such a comment with, “Why, thank you!”

I get it why such a compliment of sorts infuriates others who are dealing with the harsh and often invisible symptoms of MS. It’s as if to say their challenges, struggles, and sufferings are imagined. Such realities are instantly dismissed by the superficial perception that the person “looks so good.” 

It took some time for me to not get silently insulted when I heard these words. I mean, my hands are always numb like they’ve fallen asleep. I can’t feel my feet because they’ve joined my hands in a state of simulated slumber. High levels of fatigue drain my energy to the point that it’s as though I’m wandering through the day in a pool of thick molasses. Oh yeah, and my MS-affected bladder forces me to control my liquid intake and monitor exactly where the closest restroom is.

I eventually realized that when people say things such as, “You look so good,” it serves me better to take these as words of encouragement to help me through the unseen challenges I’m facing. Depending on the day, it isn’t always easy to find hope in such phrases, so here are three points I use to keep these words in perspective.

1. “You look so good” beats the alternatives.
Knowing Jennifer for 18 years ¬– including 15 years of marriage – I’ve learned there is one three-word phrase I should never say to her. “You look tired.” This immediately morphs any appearance of her exhaustion into one of explicit irritation. She compassionately points out that if a person looks noticeably tired, why make them feel worse by telling them the obvious?

Excellent point, Jennifer. With this, “You look so good” doesn't seem so bad after all. 

I think of how much it would crush me if a person pointed out all that I had wrong with me because of my MS. I mean, would it make me feel better if they said something like, “You have MS? Oh, I kind of could tell because you look and are moving like you haven’t slept in days, your frequent trips to the restroom are annoying me, and I will gladly take care of the lunch bill because I see how much you’re struggling with taking your debit card out of your wallet because your fingers have lost all sensation.”

No. As a matter of fact, it would make me feel quite a bit worse. So, for now, let’s stick with how I look on the surface.

2. And the Oscar goes to … You!

I often say that people living with MS should all get nominated for Academy Awards every single day. For the dramas we endure. Comedies we create. Action we direct. Our storylines that inspire. It’s like we each are the star, supporting actor, director, and producer of our own MS show. 

And as we go to sleep at night, we then turn into our own toughest critics and evaluate whether our day was a smashing MS success or a struggling personal flop. We then embrace the high points and low points and build on them in hopes that our new release of tomorrow is better than the prequel that was today.

So, when someone says, “You look so good,” don’t take offense. You owe it to yourself to take a bow. You’ve successfully portrayed the life of a person who has MS and nobody could tell it. Bravo! With an uncontrollable disease, you’ve successfully controlled the narrative of what others are seeing.

It’s not that we’re hiding or ignoring our truest of realities. It’s just that we only let our closest of friends, family, and medical professionals go behind the scenes and see everything – the good, the bad, and the ugly – that goes into our MS production.

3. I embrace my MS invisibleness.

Nobody else can see or tell that I have MS. If given the choice, I wouldn't have it any other way. 

Such as the time when I was walking to the coffee shop with coworkers and had to randomly stop to sit and “tie my shoe.” They didn’t notice my shoe wasn’t totally untied, but this convenient excuse (because even people who don’t have MS need to stop and tie their shoes) offered a chance to rest my tired legs so I had the energy to make it to my caramel macchiato. 

Yes, everybody knew I had MS, but if my disease was more visible, I fear my colleagues either would: A) Constantly be asking me, “Do you need to stop and rest because of your MS?” or B) Not invite me to go with them at all because my MS was slowing down their coffee run. Again, I was controlling the narrative of my MS and knowing when I should or shouldn’t give it a starring role in the events of my day.

Even more than this, I embrace my invisible MS because I think of Jennifer and other people with MS who need to use assistive devices such as wheelchairs, walkers, and scooters. Their MS or disability is undeniably visible. 

At first sight, people know Jennifer is dealing with something. And this leads them to do ignorant things such as:

* Talk to her more slowly and in a louder voice.
* Ask me about her while she’s sitting right next to me (“Does she need a roll-in shower in the hotel room?”).
* Say insulting things to her such as, “I wish I had one of those today” as they walk by pointing at her power wheelchair. 

What she wouldn’t give to not have to deal with such outward insensitivities simply because she can’t hide her MS. So even if I have to do uncomfortable things such as justify my fatigue, frequent trips to the restroom or inability to handle the tongs at a buffet, I embrace my MS invisibleness.   

It truly doesn’t bother me that other people don’t see my MS or that they don’t understand it. MS is a complex disease that affects everyone differently. This is my disease. My MS. I don’t expect others living with MS will fully comprehend my realities, so why should I put this expectation on people who have never heard the phrase, “You have multiple sclerosis.”   

What’s that you say? But I look so good?

Why, thank you!