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Confronting the Uncomfortable During Multiple Sclerosis Awareness Month

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March is Multiple Sclerosis Awareness Month. It’s an opportunity to educate people about multiple sclerosis; what it is, what it means, and why it is important to learn about it. But here’s the problem. It tends to make people uncomfortable. People are often uncomfortable with pain. They don’t like to talk about it, and they are reluctant to share it when they are experiencing it. They often look away or try to find quick fixes to allow them to change the subject.

But discomfort doesn’t have to build walls between people. Instead, it can be an opportunity for empathy. What is empathy? How is it different from sympathy? To put it simply, sympathy is to feel pity and sorrow for someone else’s misfortune. Empathy means to share in another person’s emotions. It’s a willingness to try to understand what they are experiencing.

When a person is diagnosed with a chronic disease, there is usually an initial rush of support from friends and family. But with a lifelong disease that usually only gets worse, there isn’t a finish line to cheer you on to. It’s an endless battle that can be exhausting to navigate not only as a patient, but also for those around them.

During an awareness month, you are given the opportunity to better understand the condition(s) your loved one lives with. It may make you uncomfortable. That’s OK. Don’t run from it. Instead, lean into it. The best thing you can do is to take the time to share in just a fraction of what your friend lives with before you return to your life.

We don’t need you to try to fix it, or give us the latest remedy you read about online, or tell us that your Aunt Jane has it too and is fine. Maybe her disease hasn’t progressed as far, or maybe she doesn’t share what she experiences with you. What we want is for you to try to understand. In the moments when you put yourselves in our shoes, perhaps a light bulb goes off in your heart and you think, “Wow. That must be so hard.” It is the acknowledgment of our struggle. It validates us and gives us the feeling of someone walking beside us for a few moments to share in our journey and help shoulder the burden.

We know it is hard. We live with it every day. But most of us aren’t looking for sympathy, just someone to stand beside us from time to time and cheer us on. We are running marathons, not a sprint. During a sprint race, the track is lined with cheering crowds to help push you forward quickly. In a marathon, after you leave the group of supporters at the starting line, you run most of the race on your own, buoyed by the others around you running the same race. They alone can fully understand the path you travel. But the road is long and there are times when you run the race completely alone. That’s when the cheerleaders are so important. They are like the support stations set up throughout a marathon; the medical tent, the water handed out, and friends and family at key spots that are just waiting to cheer you on in your journey.

Having MS is like running in many marathons. One race ends. You are exhausted, but those around you at the end of this race help pick you up and warm you up with a blanket until you recover. But you are a marathon runner and it won’t be long before the next event is here and you will need to run again. It may be a completely new course, with new and unique challenges. But even if it is the same course, you will not run the same race. There will be different runners with you. The conditions will be different. You may not have had enough of a break in between to prepare. This is life with MS.

I’ve had some amazing cheerleaders throughout the course of my illnesses. I don’t think it is a coincidence that some of the folks that have cheered the loudest are ones that fight their own difficult battles. They know what it feels like to fall and rise over and over again. Since my transverse myelitis and multiple sclerosis battle began in 2016, I have lost four cheerleaders to their own illnesses, two within the last year. It’s a sobering reminder of our mortality, and the void of their presence is palpable to me.

The MS journey is different for everyone. It is even different for us in our own day-to-day adventures. Each day brings with it a complicated set of symptoms that range from annoying to major life-impacting realities that can change day to day, hour to hour or even minute to minute. Some symptoms set up residence and are here for the long haul. Others come and go. We learn to develop a wide range of coping mechanisms and sometimes have to work very hard to appear “normal” or make it look effortless. Ask someone who is battling MS about how the simple task of taking a shower can be an exhausting part of a day. Every day holds a new challenge.

Most of us don’t share our stories for sympathy. Sometimes, it is a way to reach out a hand to say “Come walk with me a while, for this hill is steep and I am tired.” You would be amazed at the strength that can come from walking with a friend in empathy. It changes nothing, and yet it changes everything. Sometimes, it is a way for us to offer you valuable lessons our adventure has given us. Each person travels on their own journey with valleys and oceans to cross, and hills and mountains to scale. The MS battles are not easy, but because we fight them daily, there are lessons we sometimes learn along the way that helps us to refocus on what is important. We learn to persevere and how to hold onto hope in darkness. If we let it, our pain can teach us and we can share that bridge with others when they need it. If telling my story can bring hope or encouragement to anyone else, I am happy to share it.

MS Awareness is a way to say this condition is hard, and there is no cure. We want to support research for better treatments and maybe even a cure someday. But more importantly, it is an opportunity for empathy, not only for those with MS, but for those with other chronic conditions and struggles. So, as I share about MS this month (or at any time) don’t be afraid to learn about it and walk beside me for a bit. As we walk together, it is my hope that we may both come away feeling perhaps a bit more connected, and maybe even a little bit stronger, too.

This story originally appeared on

Getty image by Nadia Boromtova.
Originally published: March 9, 2021
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