While this disease has threatened my physical abilities, it has also expanded my heart.
When I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) a week before Christmas 2014, my thoughts were both all over the place and singularly focused on survival.
My two sons were just 4 and 1 years old, and my spouse and I were 10 years into our marriage. At the time, I was asking the basics: What is MS? How will MS affect our family? What does it mean for the long term? Can I be a good mom or a good wife with MS
Not on my brain at the time — and surprising to no one — was how MS might make me more compassionate.
MS comes with some pretty hard-to-swallow potential symptoms and complications: the loss of speech, thought, sight, and mobility to name a few. Even the daily symptoms — numbness, brain fog, fatigue — are daunting.
I sure wish I didn’t have MS, and I certainly don’t wish it on others, but I’d be lying if I said that MS didn’t also make me grow in the areas of empathy and compassion.
I want a cure for MS. But I’d be happy if this more expansive outlook toward myself and others stuck around forever.
Growing up, I was scrappy — one of those kids involved in sports year-round, sometimes two at a time. As I aged into adulthood, I prized my physical health. I run, walk, and enjoy barre3.
On top of that, I am competitive. When my husband and I were first dating, we went on a “casual jog” together, but when I wanted to impress him with my speed, I outdid myself. I started to see spots and then fainted, which led to more embarrassment than I’d care to admit.
The point is, I was willing to go to ridiculous lengths to display my ability. If anything, I was able.
So when MS first entered my life (and as it flared several times over the past 7 1/2 years) and seemed to threaten my abilities — my sight, my mobility, my energy — it felt personal. I got angry before I got compassionate.
MS forced me to change my definition of ability and softened my competitive edge… if only just a little.
I’m grateful for no longer seeing everyone as my competitor, my own body included. I believe I need to be my body’s biggest cheerleader: I need to treat her well and listen to her, especially when she needs rest. When I didn’t listen (and at first that was a lot of the time) I paid the price, usually with symptoms like fatigue, anxiety, brain fog, and an overall feeling of being overwhelmed.
Over time, I’ve discovered that listening to my body’s needs is equivalent to treating it with compassion.
I have young kids. I’m about to enter year 15 of teaching, so I still have half of my career to go. I want to be in it (family, career, all of it) for the long haul.
I also know that with MS, anything can happen at any moment, so I must treat myself well. I want to be as healthy as I can for as long as I can.
Each time I am patient with myself for not doing as much as I thought I could, for being tired for no reason, or for canceling plans because I was feeling off, I am deliberately making a choice to speak kindly to myself, to say that my choice was actually good for me.
Having MS means I can’t afford to be silent out of politeness
As a result, I’ve increased my compassion toward others as well.
In a way, it’s as though my own body is a training ground for how others should be treated. When people I knew were diagnosed with MS or had MS-like symptoms that turned out to be something else, my heart felt the pangs of terror from those first, scary days when I was initially diagnosed.
It’s connected me to people and friends with cancer, lupus, and Lyme disease over shared experiences, and for every sadness and ache over a diagnosis, it has mended hearts in our shared humanity.
Of course, there’s a difference between feeling compassion and acting compassionately. Still, there’s a natural progression between the two. In the past, however, I tended to shy away from speaking up. I was always afraid of coming off too strongly or rubbing someone the wrong way.
Having MS means I cannot afford to be silent out of politeness. I’ve had to put aside irrational fears about being a troublemaking patient when I’m scared or nervous and feel inclined to call my doctor.
It means I’ve had to ask more questions aloud than I was comfortable doing at first. It means pointing out helpful comments, as well as those that hurt, to friends and family. It means letting folks know when I feel misunderstood.
Furthermore, having MS has helped me speak up for others.
It’s possible I would have slowly grown into having more courage to speak up without MS, but I believe MS has hastened this growth.
There are so many of us with MS, but in the big scheme of the global population, we’re minuscule, small potatoes, a blip. Tiny percentages and the “least likelies” are often overlooked. But when you become that statistic, you become the underdog, and it mobilizes you to fight for the little guy.
A friend of mine without MS gets terrible migraine headaches, the kind that wipe her out for days. I don’t know what that’s like, but I do know what unmitigated pain feels like, and I know what blurred vision is like, and I know what it’s like to only be able to lay down in bed.
MS is a funny sort of glue that bonds me to others and makes my heart grow bigger every day.
MS is no fun. I wish it on no one, and I hope and pray with all my might that a cure is found, and soon.
But the good that’s come out of it — the good that’s allowed me to love myself and others more fully? I wouldn’t trade that for the world.
Medically reviewed on June 27, 2022
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