MS Is Bad, but It’s Not the Worst Thing That Could Happen to Me

Every human life experiences some degree of suffering. Keeping things in perspective helps me feel less overwhelmed.

Late last year, in my city, a gunman came into a nightclub and murdered 5 people and injured 17 others.

In April of last year, I was with one of my best friends when she received the news that her beloved 24-year-old son had ended his life.

I recently made a purchase of a handmade item from a woman in Ukraine who has been enduring numerous and ongoing traumas because she is, simply, a victim of war.

We all experience heartbreaking tragedies in our lives. My own body suffers daily and my life has been drastically altered because of primary progressive multiple sclerosis (PPMS). But for me, a little perspective helps to remember that it’s not the worst thing that could happen.

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Early messaging about suffering and disability

Growing up, I did not know that life — all lives — would endure suffering of some kind. I thought that if I did the “right thing” and made some reasonably good choices, I would, of course, face some challenges (that I would, of course, overcome with hard work), but not actual suffering.

Suffering was for other people — people who didn’t make good choices, or mistreated their bodies, or weren’t kind to others.

Then one day when I was young, I learned about Kelly, a woman in our neighborhood who had been in a horrific skydiving accident. Because of that accident, she lost the use of her arms and legs.

I never knew anything about her except that she had been a “crowned beauty queen” and now was using a wheelchair.

The message I took away after hearing about Kelly’s once “perfect life” and then hearing about Kelly’s now “horrible life” was just that — that Kelly’s life was basically over.

Years later, as someone who uses a wheelchair frequently and has hired help to assist me with tasks I can no longer do, I wonder, was Kelly’s life over? Certainly, the life she had known was over, but isn’t that true for all of us? Don’t the chapters of our life, as we knew them to be, end, and then another opens?

Maybe Kelly still had a life with meaning and purpose, despite her body no longer working as it once did. Maybe she had relationships she still cared about. Maybe she continued to enjoy sunsets and lemonade and laughter.

But that was not the message I received. The message I received was that disability was — you guessed it — the worst thing that could happen to a person.

The good and bad of comparative suffering

The truth is that we all, as humans, experience difficulties in our journey through life. Comparing our suffering is usually futile and impossible, as the types and degrees of human suffering are endless. It generally provides much more comfort and relief to remember that we all have suffered, currently or will in the future.

It’s not unlike living with MS. Each of us has a different experience with the disease (hell, my own experience with it is different every day!) and each of us has different support systems and resources. We can all probably agree that life with an incurable, progressive and chronic illness is serious and devastating, and possibly is one of the worst things that can happen to some people. MS will cause more suffering for some of us than it will for others.

Nevertheless, these differences in degrees of suffering do not change the fact that it’s an inescapable part of living.

As a psychotherapist, I know that sometimes, comparing your suffering with someone else’s can be a way of defending against your own emotional pain.

The truth is that escaping your own emotional pain is not healthy. Your pain actually needs and deserves to be acknowledged. You cannot heal something that has not been recognized.

Both/and

When MS is really challenging me both emotionally and physically, I find comfort and relief in knowing both things — that all people suffer and that it usually doesn’t help to compare my suffering.

Yet, I also do find relief at times by comparing my suffering to others; I always ultimately recognize that mine is not the worst a person can experience.

My neurologist’s office is next door to a big children’s hospital. Even though every time I go there, my disease has progressed, and consequently, my suffering has increased, I always think to myself, “I am so grateful I am not a parent who is hearing that my son has an inoperable brain tumor.”

That comparison, for me, puts the difficulties that come with my MS in some perspective, and it allows me to remember that MS is not the worst thing that could happen to me.

Defending my life

A few months ago, a friend called and, as expected, kindly asked, “How are you?”

I responded by saying “I’m good!” because that was true for me at the moment.

She said, “Really?” as if there were no way, because of my disease and disability, that I could genuinely be “good.”

“You can be honest with me,” she said.

I, once again, said, “No, I really am good!”

It occurred to me how many messages I receive, in various ways, that my life with MS cannot possibly be good. American culture puts a tremendously high value on independence, productivity, ableism, and health. How could being sick, in a wheelchair, and needing assistance really not be the worst thing that could happen to me?

Because it is not.

No doubt MS is bad. In fact, some days I am close to feeling tortured by MS. But this article is about remembering that MS is often not the worst thing that can happen to you.

Out of the trap

Sometimes, especially if I’m having a particularly painful day — emotionally or physically — I find myself still falling for that societal messaging about illness and disability. On such days, I can find myself falling into the “worst thing ever” trap.

Inevitably something will happen — perhaps I flip on the news or speak with a client — and I am quickly reminded that my life with PPMS, as hard as it is, is not the worst thing that can happen in a human life.