“I was always made fun of because I was always exhausted. I was like the grandma who always went to bed early,” she tells Parade.com. “And then my legs started to go numb, and then I had the thing where I put my chin to my chest and it was like this electric shock went down to my toes—I later learned ti was called Lhermitte’s, which is a symptom of MS.” Platt kept telling herself she had just hurt her back, but MS runs in her family—her grandma had it—so after a while, she had a sneaking suspicion she was dealing with the same thing. “When I found out I was of course devastated, but I also felt grateful that I had a little bit of clarity and could treat it as best I could,” she says. In honor of World MS Day on May 30, Parade caught up with Platt and her brother-in-law, Ben Platt, to learn more about how she navigated her diagnosis and the years after with such grace. Here’s what she had to say.
The most common misconception about MS
When we think of MS, we often think of being wheelchair-bound—and Platt admits that that was one of her first thoughts, too, along with My life is over. “I felt like I was damaged goods, like I would never find a husband or have kids,” she admits. “When I met my husband Jonah [Platt], we were putting on an MS event, and I showed up at six in the morning. He was there before I was, ready to work registration. When you find the people you love in your life—and who love you back—you realize you just have to live every day and be present as best you can. It’s not a wheelchair sentence, and you’re not damaged goods.”
How she manages her symptoms
Platt and her brother-in-law Ben partnered up with MS in Harmony, an organization that uses music therapy to help manage MS in symptoms, and Platt says music therapy is one of the things that’s helped her the most. “With music therapy, a board-certified music therapist takes your through different modules and uses music to help you combat the everyday symptoms of MS,” explains Platt. “It’s using music to connect the mind, body, and soul in different ways. An example is that one of the main symptoms of MS is memory and loss and forgetfulness, so you can create a song out of your shopping list which can make your trip to the store a lot easier.” Platt also admits that once a music therapy session made her ugly cry—in a good way. “Once a music therapist asked me to sing—which I try to leave to the in-laws—but she had me list some qualities I like about myself, and I was really embarrassed because I think I ugly cried during it. It’s nice to be able to use this kind of tool to list some of the good things about yourself, because we tend to focus on the negative.”
The biggest challenge of living with MS
Platt says that it actually isn’t the physical limitations of MS that get to her the most—it’s the cognitive ones. “You walk into a room, say, and you forget how you got from A to B,” she says. “Someone with MS knows the difference between an everyday flub and something to do with MS.” But talking about these struggles and being open really helps. “A lot of the time I feel like it’s not even worth mentioning, but then my husband is like ‘No, Courtney, I want to know those things. I want to understand.’ So let people in and let them help. Just sharing and helping the people around you understand what you’re going through is the most helpful.” And along the same lines, Platt notes that if you’ve recently received an MS diagnosis and are struggling with it, one of the best things you can do is start making connections ASAP. “When I got my diagnosis, I wish I’d had somebody I knew who was like me and could make me feel like this wasn’t going to ruin my life,” she says. “Be open and honest with friends and family about how you feel. Finding your team of doctors is important, too.”
What Ben Platt admires most about his sister-in-law
At the very end of Platt’s chat with Parade, her brother-in-law chimed in with what he admires most about Courtney. “She doesn’t want to be defined by MS, but she also has a real pride and knowledge about it. She allows it to just be a piece of the puzzle. She’s such a hard worker, and she brings such positivity and strength to every day. It’s really inspiring.” Next up, here’s how to support loved ones with MS during the pandemic.
