MS and the Pathway to Resilience During a Pandemic

At this point, most of us have known someone who has contracted COVID-19 (and sadly, many of us know someone who has died from it). I can think of several friends who’ve had it and have paid special attention to their posts on social media as well as their comments in real life. So much of what they say and think seems to mirror my own experiences learning to live with MS. And it got me thinking. A hidden blessing that comes from learning to live with any chronic illness has got to be this lived experience carving out a pathway to resilience.

Chronic = long haul

Most of my friends who have had COVID-19 are doing fine now, with few if any residual reminders they were ever sick. But one friend appears to belong to that group of people who experience health problems long after the virus has left their body. They’re called “long haulers,” and I can’t help but draw comparisons between them and those of us who live with MS or other chronic illnesses. This particular friend recently shared on social media that they were asked if they felt superhuman, having survived the virus.

They confessed to a multitude of conflicting emotions:

• To them, the virus isn’t gone—they still feel its presence (and it sucks!)
• They surmounted huge odds to survive it, even if they aren’t 100 percent better, and yet...
• Feelings of inadequacy rise when they share that, as a “long hauler,” they aren’t “over” COVID-19, and
• They fear being treated like a hypochondriac for admitting they weren’t feeling 100 percent

The blessed ignorance of health privilege

This reminded me of a friend in a neighborhood game group who put me on the spot at break time, asking me whether I was “over that whole MS thing.”

That was one of those days when the saying came true: people don’t remember you for what you did, but for how you made them feel. Even now, I'm overcome by the dread in that moment: the anger, humiliation, disappointment, and awkwardness.

I’m sure my long-hauler friend must have felt just as awful.

I know that, in both cases, these questions were well-intentioned. People do care. They don't mean to be insensitive.

Responding to insensitive comments

But how does one gracefully answer that question without ruining the whole night for everyone present? It’s not why I went to game night; I went looking for quasi-normal social time, to escape my MS through laughter, cheesecake, and hugs.

In that moment, I had three options:

• Be upset by their ignorance of the chronic, incurable reality of MS
• Put a smile on my face and say everything is “fine” (a lie)
• Grab this teachable moment to explain how MS is not something one “gets over”

How do I explain MS without bringing down the mood?

I tried to be friendly while sharing that I’ll never not have MS, that the damage to my brain is irreversible and permanent.

“I take medication to keep it from getting worse,” I told her. “And I take a bunch of other stuff to make me feel better.” (I said this while my ears rang like church bells and my leg tremored even as I stood right there in front of everyone.) “I mean, I’m having symptoms even as we speak,” I said. “And some of those...there’s nothing for them. But most days, you just find a way to live with it.”

But even as I put forth my most upbeat demeanor, there's no way I was able to explain this without ultimately bringing down the energy in the whole room. Later, a friend of mine who is a cancer survivor gave my shoulder a loving squeeze. She knows how I must have felt. I recall her gesture quite fondly.

We are trailblazers

Let’s face it: Teachable moments that demand the energy of the afflicted to do the work that healthy people ought to do for themselves mostly steal our “spoons” and leave us with remembered scars. And yet, we face them more often than not. Fortunately, we can, and do, move beyond those moments.

I’m hopeful for my long-hauler friend. They’re a generally optimistic person, with fulfilling work, a loving family, and a good support system. I can’t help but imagine they’ll persevere just like my MS cohorts have.

Resilience is our superpower

In fact, if the chronically ill could stake a claim to a superpower in the wake of incurable illness, it would have to be resilience—the ability to overcome difficulty, to spring back against adversity. Maybe not every moment of every day. But even Superman has to deal with kryptonite.

May “Resilience” serve us as the name of this trail we each blaze for ourselves through a relapse, a bad fall, sleep lost to pain, and a thousand poorly worded questions.