The Benefits of Being Vulnerable

I’ve learned that opening up about living with MS and its challenges helps me connect to others, sometimes in surprising ways.

There’s a popular game I grew up playing called Six Degrees of Kevin Bacon. It works something like this: You name someone who knows someone who met someone else who went to dinner with a person who was in a commercial with Kevin Bacon. The idea is that the world is big, but we’re all basically connected.

I’ve found a new variety of the game: Six Degrees of MS. We folks with multiple sclerosis (MS) are a paradox: We’re a relatively big, small group. One million people live with MS in the U.S., which may sound like a huge figure, but given that more than 333 million people currently live in the U.S., we’re a pretty small piece of that pie.

Eight years ago, when I was first diagnosed, I didn’t know a single person with MS. My circle has widened considerably, and while I don’t want anyone else to be diagnosed with this chronic illness, I couldn’t be happier about opening myself up to and knowing the people I’ve been so privileged and happy to meet.

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Vulnerability leads to connection

Simply put, being vulnerable can often reap the reward of connection.

Whenever I tell others that I live with MS, that person often confides in me that someone close to them also has MS. Still, my health is my business, and I weigh the decision to share each time before speaking.

I’m a high school English teacher, and at the beginning of each year, I give my students a quick picture of who I am. I tell them about my family, my hobbies, and my summer. They see photos of my cat, our beach vacation, and my annual BikeMS event in Oxford, Ohio, before I tell them briefly about MS.

I do this because I want to cultivate a safe, authentic environment. In addition, my condition causes me to be out every few weeks, either for an IV infusion of my meds or simply because MS is unpredictable.

When a terrible attack sidelined me in January 2019, I was out of the classroom for 5 weeks. Because my students knew I live with MS, it alleviated some of the pressure and need to share while I was in crisis.

Being vulnerable, though not easy, actually reduces my stress. This year, when I shared my story at the beginning of the year, I received an email that evening from the mother of one of my students saying she, too, lives with MS. She didn’t know anyone else with the disease and hadn’t shared outside of her family, which is absolutely her right and her choice, but I’m so glad she bravely reached out to me. She’s since become a friend, and I think I can safely say that both of our lives are richer for knowing one another. I have lots of stories like this one.

Vulnerability leads to a better, more empathetic world

That subheading is a big claim, but I believe it’s true. Friends and friends of friends have texted me about people they love who have just been diagnosed. Would I be willing to text, talk, or meet with their newly diagnosed friend?

Most of the time, these are easy yeses. I’m at a place in my medical journey where I’m emotionally healthy enough that being vulnerable with people I don’t know isn’t just something I can do. It’s something I want to do. When I’ve struggled, been in pain, or felt lost at sea, rarely has keeping to myself and powering through been the right choice for me. When I’ve opened myself up to others’ compassion and to their kindness and presence, I’ve felt things like hope and peace.

Here’s another incredible anecdote: Some friends invited us over for dinner. We used to see them every day, but since they moved to a different neighborhood, we’ve not kept up with one another as much as we’d like to. My friend was chopping lettuce in my kitchen when she confided that she never knew how to talk to a childhood friend of hers who has MS.

What she said next floored me: Because of the way I had opened up to her about my MS journey over the years and through reading the articles I wrote and shared on social media, she no longer felt awkward or afraid when talking to her friend. I helped give her language and tools so she could be a better, braver friend and so that her friend felt loved, seen, and known in a deeper way.

Of course, not all people are safe people. I’ve had times when I’ve shared my experience only to have someone second-guess it. When I’ve been vulnerable about fatigue, I’ve often been met with statements like, “Well, all parents are tired,” or “That’s just called getting old,” or “Have you tried Crossfit or the paleo diet?” There is no shortage of people who want to cast doubt on my own lived experience. But still, the positive connections and community I’ve found from being vulnerable have far outweighed any negatives.

The takeaway

In her 2015 book, “Rising Strong,” Brené Brown frames vulnerability as “not winning or losing. It’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness. It’s our greatest measure of courage.”

We get just one life. For whatever reason, some of us live this life with MS. I don’t want to hide this part of me, or any part of me (except for the part that eats Cheetos in a bed made with white sheets). I often think of my wedding vows where I more or less said, “Dude, I take you as you are, the good, the bad, and the in-between,” and my new spouse more or less said, “I take the whole hot mess of a package that is you.”

MS is part of who I am, and I will always, always hope to face my life with the greatest measure of courage, even when it’s scary to do so.