The Importance of Community with MS

Having friends who “get” life with MS can help you make sense of your own journey.

I am a high school English teacher, and my seniors have been studying rhetoric all year long. One of the terms they know, paradox, refers to a statement that seems to contradict itself but turns out to have a rational meaning, as in this quote from Henry David Thoreau’s “Walden”: “I never found the companion that was so companionable as solitude.”

Sounds both confusing and deep. Sounds like I want to agree with it, to find my own self, my one true companion. Sounds like a sound bite from a wellness retreat commercial.

Now, there are times when I want to be alone. I’m a sensitive extrovert, so even though I love being around people, I thrive on having time to myself to recharge, and sometimes that alone time is where I experience the perfection of Thoreau’s words.

When I’m in nature, whether I’m alone or with people, I’m aware of my smallness, of my impermanence, of the vastness of the world.

I don’t mind being alone, and sometimes I’d prefer to be alone in the forest, to get lost in the cadence of ocean waves, to drift off into dreamland on the shore of a babbling brook.

By contrast, I know that when I feel lonely, or scared, or lost, or in pain, it’s not the time to be alone. These are times when I feel like the only one who ______ (fill in the blank with anything related to my multiple sclerosis).

This is a code red in my book, and I need my community.

This is a tell-my-husband, text-my-sisters, call-a-friend, share-a-story-on-Instagram moment. It’s my version of a cry for help when multiple sclerosis (MS) has made me feel like something is terribly wrong with me.

Then I remember what author, associate professor, and historian Kate Bowler says: “You are not the bad thing.”

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A new perspective

Bowler is right. I am not my own enemy, and neither is my body. Whether I’m feeling ill from MS or COVID-19, or when I’m cruel to myself about wrinkles or weight, I must remember I have a good, good body. MS is part of me, but it isn’t who I am.

An MS friend texted me one day in outrage. A popular Instagram profile dedicated to posting good news and uplifting stories published an ostensibly feel-good story about a couple who stayed together in spite of one of them developing a chronic illness that came out of nowhere.

She reposted the story with a caption that read something like, How about we don’t applaud healthy, typical people being in relationships with those who have illnesses or disabilities as though they are heroes or martyrs.

I love this friend dearly. She’s loud about MS in all the right ways, and she feels like a kindred spirit even though we don’t see each other in person nearly enough.

My friend is part of my MS community, and she reminds me of one of the best parts about communities: They help you articulate thoughts about how to frame your illness.

I’m sure I’ve done that for others through conversations and writing articles. Countless people with MS have done that for me — some I know well, and some I know only through the veil of digital media on Instagram and Bezzy MS.

Saying community is important almost sounds too obvious, but the more I think about how and why I believe this, the more I think it’s worth spelling out. In addition to reframing the MS narrative (and perhaps some stinkin’ thinkin’ I’ve picked up along the way), in my experience, community is important in the following ways:

There’s strength in numbers

When you have a disease that only .04 percent of the population currently has, the diagnosis can feel lonely and personal.

In fact, I didn’t know a single other person with MS when I was diagnosed in 2004, and while I don’t exactly want anyone else to have MS, it is strangely comforting to have a few friends who know what daily life with MS is like.

Additionally, finding an even bigger community, like the hundreds of riders I cycle with each summer in Bike MS or my Meat Fight community, has been a true gift.

MS is a snowflake disease

No two journeys are alike, but it’s helpful to hear other people’s experiences.

I’m so glad I’ve been able to share my experience with people who are newly diagnosed. Whether it’s my journey to diagnosis or tips on how to navigate your first MRI, I know it’s been helpful for others to hear my story, and I’ve been immensely grateful to hear from others when I experience a new symptom.

I know our paths won’t be identical, but sharing these experiences with others has been a helpful compass in disease navigation.

Sometimes you just need people who get it

Full stop. The irritation and fear that comes with tingling and numbness. The random pain that flares up from time to time. The fatigue. Being able to text a buddy with MS the words Freaking fatigue, man, and knowing that I don’t need to explain myself or that I won’t be second-guessed, is no small thing.

In conclusion, Thoreau had a few good ideas. I’m going to assume he didn’t have MS while he was camped out like a hermit. In other words, he had the luxury of health and — spartan living or not — the constancy to go it alone. I can admire that, but I’d rather travel along this MS path with the people who make it count.