Skip to Accessibility Tools Skip to Content Skip to Footer

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie
    3 years ago

    I have discovered something about me in the 17 years of MS. That is I have found I am more patient with others, especially those dealing with some kind of illness.
    Before MS I was busy living my life and raising kids. I had no time to listen to anyone else’s problem much less have any empathy for them. This makes me sound like a harsh human being and maybe I was.

    Now though, I will take the time to anyone that wants to talk to me about what rotten thing their MS is doing in their life that day. I can listen and understand about life with a chronic illness.

    Maybe it’s the MS, maybe it’s just that I’m getting older. All I know is that I’m a much more patient person. If I have to thank MS for anything, I guess that would be it.

  • potter
    3 years ago

    I think it is hard to have empathy for people with other disease when you are dealing with one yourself. I think part of the problem is the different charities call you constantly for donations. They start harassing so much that do don’t want to give to anybody, even my 94 year old mother in-law has cut back on donations. She told me the more money I give the more calls I get, I can’t take it anymore. At least I still have empathy when it’s person to person communication. Potter

  • zanster
    3 years ago

    Johan,
    Thank you for your article. I have just about the same symptoms as you but I’ve only known I have MS for 3 years. I have a life partner who is determined to do whatever is necessary to be supportive and empathetic, but we know she cannot truly “know” and I agree that there is no need. As a university professor she lives a full, important life. Frankly, one of my big problems is having empathy for her. My mood swings and, at times, my angry inability to accept my situation keeps her on edge and it’s just not fair. I guess I’m still working through the grief of losing the life I had. I just have to control taking it out on her.
    Thanks again for your article. It made me think and consider…which is a good thing!
    Suzanne

  • zanster
    3 years ago

    I meant to say Lisa, not Johan! Apologies!!

  • Johan
    3 years ago

    Great article Lisa and Thank You for all the wonderful work you do for the MS online community. Now all I gotta do is figure out this empathy thing.

    JE

  • Lisa Emrich moderator author
    3 years ago

    Thanks so much, JE, for the kind words. I sincerely hope that my own words help even a few people. 🙂
    Best wishes, Lisa

  • Poll