5 Inspiring Lessons Learned from Living with MS
A diagnosis of multiple sclerosis (MS) can feel like a shock wave rippling through your life, and a slew of difficult emotions often follow. But reminding yourself that you’re not alone can help you feel more empowered to navigate your situation and move forward. The truth is that 2.5 million people around the world are in this fight with you. And together, they have decades of wisdom to pass down.
In this spirit, we asked five people who have MS to share what they wish they’d known early on in their journey. Here’s what they had to say.
You Have More Power Than You Think
“If you head down the Dr. Google—or, indeed, the Dr. YouTube—path, just know that what you read or see might be relatable for you. But it won’t be you.”
Mark Webb, 53, of Dunstable, Bedfordshire, England, is a freelance communications and social media consultant who works with Shift.ms, a worldwide social network for people with multiple sclerosis. After Mark was diagnosed with MS, he entered a grieving period and quickly found “only the doom and gloom” online. Mark says he started going to counseling several months after the diagnosis to learn how to cope.
“I wish I’d known that although an MS prognosis is uncertain, there are some things we can control: healthy eating, regular exercise, mindfulness, and getting onto the right MS medications as soon as possible,” he says. “Although to many people an MS diagnosis is devastating, it is more and more likely to be okay, given the advances in medication, in the understanding of the disease, and how to manage the disease.”
Make Time for Self-Care
“I wish someone had told me that my ability to help others would actually increase if I took more time for self-care.”
When Sarita Farnelli, 27, of Richmond, Virginia, was diagnosed with MS, she didn’t have time to think about herself. Her mother had just gotten out of a coma, and soon after that, her father was diagnosed with a rapidly progressive terminal form of brain cancer.
As Sarita neglected her own health, her MS symptoms, which included depression and relentlessly hot and itchy legs at night, continued to escalate. A couple of months in, she knew she had to drag herself out of her situation and began working out. Her previous exercise routine was too difficult, so she shifted to gentler exercises like qi gong and tai chi.
“What I benefited from most was a mind-body practice, something that really put me in the middle and made both things work a little better at the same time,” she says. “It has been like giving myself the perfect gift that no one else could pick out for me.”
Mind Your Self-Talk
“You have to be your biggest cheerleader.”
Autumn Grant, 29, of Nashville, Tennessee, was diagnosed with MS shortly after a tornado hit her business, and just weeks before the world shut down from COVID-19. Her doctor told her to try not to feel anxious, but she couldn’t help feeling overwhelmed, alone, and afraid because of the uncertainty of her prognosis and relatively young age.
In that “season of ‘this sucks,’” Autumn noticed that her body ached and hurt, but shifting her perspective to be a little more positive helped dial down her symptoms.
“When you have any autoimmune condition, you use all of your energy just to get up and take a shower,” she says. “Having grace for myself was the biggest thing—just get out of bed and take a shower; then go from there.”
It’s Important to Adapt and Grow
“Managing MS is not a marathon or a race. It’s a day-to-day adventure, and no two days will look the same.”
Kresence Campbell, a 35-year-old wife, mother, and psychotherapist in Willingboro, New Jersey, has been living with MS since December 2016. She says this journey has taught her to be more in tune with her body and to take better care of herself with therapy, stress reduction tools, boundary setting, and medication management. She’s also learned the importance of financial literacy—because this disease is expensive.
“I learned the hard way to manage my MS expenses,” she says. “I was charging my credit card, and before I knew it, I was in over my head.”
She recommends creating a budget, finding a local farmers’ market or co-op for affordable nutritious food, and asking manufacturers about discount programs for costly medication. The National Multiple Sclerosis Society also provides a handy list of numerous resources for financial planning.
Don’t Overlook Silver Linings
“You can make your own space.”
Five years ago, after a painful spinal tap to confirm his diagnosis, followed by a 10-day recovery, Damian Washington, 40, a Los Angeles–based actor, decided to begin making videos about his experiences. In doing so, he began to find solace and support in a powerful community.
“MS is a not-good way to meet great people,” Damian says. Because the disease affects everyone in different ways, Damian recommends being relentless in your search for camaraderie by going to numerous meetups and events until you find your people.
Or, as he did, you could create your own circle. “You are going to find so much love and expand in ways maybe you couldn’t have dreamed of,” he says.
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