If Not For Having MS, Would I Care?

We are right in the middle of MS Awareness Month and my Facebook newsfeed is plastered with orange, the color chosen by National MS Society to represent MS awareness. Fortunately I like the color orange much more than I did when I was a child. My wedding bouquet featured many different shades of orange.

Discussions of what it’s like to live with MS abound, as well as descriptions of what the disease does to someone. Those of us living with the disease may share similar experiences, but the combination of symptoms is unique to each individual. My most common symptoms include numbness, tingling, spasticity, muscle weakness, balance issues, occasional bladder issues, visual changes, and heat sensitivity. One standout I’ve noticed amongst the orange is an expressed desire for friends and loved ones to understand and appreciate more about the disease. Sometimes there is a feeling that others might not “educate themselves” enough about the disease… on your behalf.

But I was thinking today — What if I didn’t have MS?

Would I care about the disease? — Probably not.

If I didn’t have a direct connection to the disease, why would I need to know about it?

Before I was diagnosed with MS, I didn’t know anything about it. Not until after I was diagnosed did I learn about a few people in my extended circles lived with MS. For example, I had no idea that the father of a horn student had MS. He typified everything about “invisible MS.” He explained that when he had a relapse, he would get his steroids from a ball that he could carry around with himself at work. No spending a couple of hours in the infusion center just for solumedrol.

Few people understand

I also learned that the woman in the wheelchair that swam at the local county recreation center lived with MS. Although she couldn’t walk, she swam a mile in the pool three times each week year round. That’s strength! I didn’t fully appreciate how amazing this woman at the pool was until I experienced more of the disease in my own life.

Now that I’ve been living with the disease for a dozen years, most of the people closest to me know that I have MS. However, I think that even now very few family members truly understand the disease. It’s not for a lack of caring; it’s just that they don’t see the effects on a regular basis. I don’t hold this against them.

It has taken years for my husband to get to the point where he can see when I need to slow down and rest before I’ve realized that I’m about to overdo it. I love that about him. But even he doesn’t know everything about the disease; hardly any of us do, to be honest. And I don’t expect him to.

Empathy is so important

What I have come to appreciate is his enormous capacity for empathy. He doesn’t need to understand all the details about the disease to show empathy for what I might be experiencing at any given time. His willingness to validate my experience makes me feel understood.

Perhaps that’s what each of us need in this community — more empathy than understanding. Maybe we don’t need friends and family members to research everything there is to know about MS. Instead we may just need to feel supported.

I know that there will be many people who disagree with my premise, but I have to be honest. If I didn’t have MS, I probably wouldn’t care much about the disease. But I WOULD care about the person with the disease.

For the rest of the month, my plan is to spread awareness of empathy.

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