How to Reinvent Yourself When MS Steals Your Purpose

Understanding and prioritizing the feelings that connect you to a sense of meaning can help.

What gets me up in the morning? Thanks to my multiple sclerosis (MS), it’s almost always my bladder, followed by my medication schedule, rounded out by my absolute need for coffee. While these are strong motivators, they aren’t existential factors.

A sense of purpose is what gets me excited to start my day. Purpose is about having something to do that feels meaningful and worthwhile. Purpose is crucial to our overall sense of well-being.

Achieving and maintaining a sense of purpose is generally not a passive endeavor. Purposeful pursuits require resources like time, energy, and focus — resources that MS symptoms like fatigue, pain, and limited mobility can zap. MS may challenge us to adapt or even find new ways to engage in some of our most meaningful pursuits, but with a little creativity, there are always ways to cultivate purpose.

Here are the strategies that have worked for me:

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Taking stock

While it’s important not to confuse productivity with value, for many people, purpose is tied to work. Even when the work itself doesn’t feel particularly meaningful, being productive can facilitate a sense of purpose.

Still, we all wear more than one hat. Taking stock of the roles you play that aren’t attached to a paycheck can be a confidence-boosting reminder of the many ways to live a rich and purposeful life.

Consider your relationships. For me, purpose often comes from being the kind of aunt my nieces can come to in a crisis, and that has been more satisfying to me than the desk job I couldn’t keep up with. Look for opportunities to deepen your connections. Commit to calling your grandmother once a week, or challenge yourself to smile at everyone you pass on the street. Small acts can enrich the lives of those around you while increasing your awareness of what you bring to your community.

Asking to be asked

Helping others is a guaranteed path to purpose. Having MS means I’m not physically strong enough to help anyone move, and while that may be a blessing in disguise, there are many other ways I can and want to help. As an expert online shopper, I make sure an aging relative has groceries delivered every week. I’m always eager to help the neighbor’s kid with her French homework, and when my bestie wants to send her boss an angry email, she sends it to me first for softening.

Make a list of what you have to offer and share it with the people in your life. Encourage them to ask you when they need someone to water the plants or feed the goldfish. You don’t have to do your dad’s taxes. Although, if that’s what you’re good at, go for it! Even something as simple as being available for a phone call or a cup of tea can be a source of comfort for someone who needs a listening ear.

Giving advice

As an advice columnist, I can confirm that sharing what I’ve learned is a purpose-boosting powerhouse. Better still, a 2019 study showed that advice-givers may act on — and receive the benefits of — their own advice. Talking with someone about how to handle difficult scenarios (like coping with MS!) can increase your confidence and may improve your own outcomes by incentivizing you to practice what you preach.

So, add peer counseling to the list of ways to benefit from connecting with others with MS. Just be sure that your input is wanted before you provide the kind of unsolicited advice that many of us who live with MS have received.

Getting specific

From the time I was 15, I wanted to be an opera singer. I studied voice at a high level. And for a long time, singing was so inherently tied to my identity that I didn’t think I would be me without it. When I started losing the strength and athleticism required to sing professionally, I was forced to accept that my passion had become a casualty of MS.

I knew I had to reinvent myself, though the task felt monumental.

I already knew I loved performing, but I thought about what it was, specifically, that I found so fulfilling about singing. I realized how much I value story-telling, the power of words, and learning languages. Ensemble work provided opportunities to connect with others, but I also liked the quiet study of a new piece of music. I enjoyed engaging with the books, stories, and human experiences that inspired the music I appreciate most. I loved having a voice, and I don’t mind being the center of attention, either.

I wondered if there were activities that would be less vulnerable to the whims of my MS that could tick some of the same boxes that singing did. My interest in the arts led me to a gig as a volunteer docent, educating grade-school kids about art. I discovered that there’s more than one way to have a voice, and my passion for story-telling and connecting with others led to the start of my blog, Tripping On Air.

If you are grappling with a similar loss of purpose, understanding and prioritizing the feelings that connect you to a sense of meaning can help.

Finding multiple sources of purpose

Losing a version of ourselves before we’re ready can be a painful experience — one that deserves to be grieved. MS may threaten an identity or a sense of purpose you spent years cultivating. Give yourself time to discover new interests. Be open-minded and receptive to trying new things.

I’m grateful for the time I got to call myself a singer, but my experience not singing has made room for me to explore talents and interests I didn’t even know I had.

MS is a moving target that regularly asks us to adapt and change. Find purpose in multiple places, and you will be resilient when any one source of purpose is threatened.

The takeaway

MS can temporarily erode a sense of purpose when symptoms interfere with the ability to participate in some of our most defining endeavors. But cultivating a sense of purpose is crucial to well-being, and perfect health and a strong body are not prerequisites to a life of meaning. When MS forces you to reinvent, grieve what you’ve lost, and then consider the opportunity for self-discovery. It may be a surprise to discover just how many versions of ourselves we have within us.