The Importance of Advocacy When You Live With MS

Bike rides and walks help raise money for research and services. But it’s equally important to educate friends, family, and maybe even co-workers and government officials about multiple sclerosis (MS).

When I was first diagnosed with MS, I was terrified. I didn’t know anyone else with MS, and I had to quickly learn what was going on with my mind and body. Like the rock face of El Capitan, the learning curve was steep, and I felt I might plunge into the abyss at any moment as I dove into the world of MS. My pain and grief for the person I once was, a person without a potentially debilitating disease, was intense. I scrambled to keep my grip on anything stable.

I’m a talker, and so I told my friends and family about my diagnosis early on. I called my mentor. I probably told our postal delivery person. Within a few months, I had signed up for my first Bike MS so I could do something that felt positive — raising money for more resources, better treatments, or, better yet, a cure — for a diagnosis that felt so negative. It didn’t click right away that by signing up, I was becoming an MS advocate. I know others who have participated in Walk MS for years. Regardless of your physical abilities, there are lots of options out there for people who wish to get involved.

This summer will be my eighth Bike MS. I’ll assemble my team of friends — people who live without the disease but who’ve learned lots about it from me over the years. I’m grateful for their friendship, support, and grit. And then, per usual, I’ll push past my discomfort in bombarding the inboxes of all my other friends and acquaintances, as well as their social media feeds, as I share my story and ask for donations.

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Starting small

But there’s more to advocacy than participating in rides and other organized events to raise money for research and resources. Advocacy is also about educating others so that they can grow in their empathy and understanding of an often difficult and unpredictable disease.

You can start small by helping those in your immediate circle or community to understand the effects of MS on your life. For example, when I switched from Copaxone, an at-home MS treatment, to Tysabri, an infusion I take once a month at a hospital, I felt the need to share this information with my bosses and trusted colleagues so they didn’t think I was playing hooky every 4 weeks. Likewise, I’ve had innumerable hallway conversations at the school where I teach, and I’m happy to report that everyone I’ve interacted with has been kind and curious.

As I told my story to more people, and as people offered their ears to listen and their kind words to comfort, I realized the incredible impact that ordinary people like me could have when we’re brave enough to share. This was my decision, of course, and I respect others’ decisions to keep their healthcare private, but I encourage anyone who is teetering on the edge of do-I-or-don’t-I-share to take the leap. Doing so has helped me to feel more understood as I’ve shared my story and needs with others. After all, people don’t know what they don’t know.

Henri Nouwen, in “Out of Solitude: Three Meditations on the Christian Life,” wrote that “When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.”

I’ve learned that this sharing has also helped others with MS (as well as those who love people with MS) to feel seen, known, and heard. I’ve also developed wonderful new friendships and broadened my personal MS community as a result of sharing information about my diagnosis.

All these connections are significant. We humans are constantly looking for meaning, and I’m reminded of that every time I get an email about someone’s loved one with MS or a donation to my Bike MS fundraiser.

Going big and why that matters

If it feels right, we can move beyond the personal advocacy circle toward advocating on a bigger scale. This can include things like calling a senator or writing letters to a representative to let them know your stance on policy issues that affect people with MS or calling attention to insurance companies that deny coverage. People can even participate in state action days or meet with legislators in their home states.

When the Affordable Care Act was treading precarious waters a few years ago, I heard rumblings that preexisting conditions might count against us again. Obviously, I was concerned. For the first time, I called my representatives to express my frustrations, worries, and hopes. While I’m embarrassed that it took a selfish reason to make me finally advocate, a step toward advocacy is a step. Let’s not caveat our actions. Advocacy is any action, big or small, motivated by numerous reasons, working toward a common goal. In the MS community, that goal is big: A world free of MS. In the meantime, we can work toward a world with more access to better treatments, resources, and services.

There are also lots of opportunities to become a digital activist and use the power of social media to advocate for change. While social media has plenty of ills, I know from personal experience that it also has the potential to be used for tremendous good. A number of friends and acquaintances who follow my tiny corner of social media often communicate how much they learn whenever I share about MS on my account.

I want the best available treatment and equitable resources (and hopefully cures) for all of us in the chronic illness community. And to accomplish that, advocacy is essential.

The takeaway

Advocacy isn’t one size fits all, just as MS looks different in everyone. Likewise, we all have different gifts and inclinations. Some people may take to the pen (or the keyboard) and pound out a newsletter or a blog post to send to friends about their disease. Others may take part in a fundraiser. Right now, someone is sharing about his optic neuritis or bladder retention with a colleague at the water cooler, and that colleague is hearing for the first time about a disease that just a minute ago he was naive about.

I’m a natural sharer. Perhaps I overshare from time to time. But I’d rather raise too much of a stink about something that stinks than say nothing at all.