Arzón’s mother, Carmen, was diagnosed with MS in 1999, when Arzón was a freshman in college. “It was really hard because I wasn’t around her day to day,” the Peloton pro tells SheKnows, adding that her sister became “a primary caregiver in a lot of ways.”
One of the hardest parts for Arzón, now a mom herself, was seeing the rapid shifts in Carmen’s health and ability. “I would go home every two weeks, every month, and there could be such a swing,” she recalls. “I’m like, ‘Oh my gosh, I just saw you two weeks ago, and now you can barely walk. So that was really alarming, especially during that two year period where she was trying to find the right care.”
Multiple sclerosis is a chronic disease of the central nervous system, and it occurs when the immune system attacks the protective sheath (called myelin) that covers nerve fibers, according to Mayo Clinic. This leads to communication issues between your brain and the rest of your body, causing symptoms including numbness or weakness in the limbs, tingling, lack of coordination or difficulty walking, and vision issues.
For Arzón, watching her mother’s struggle ignited a desire to help — in any way she could. She ran her first marathon to raise money for MS research, and in 2013, took part in MS Run the US, a cross-country relay run that starts in Santa Monica and finishes in New York City. Arzón, who was getting into ultramarathons (anything over 26.2 miles) at the time, ran the Utah stretch, which required her to tackle five marathons in five days.
“I think part of the reason I did this fundraising and I participated in these runs is because there are so many things that you can’t control with MS, and it feels really disempowering,” she says now. “I was like, ‘What can I control? What can I do?’ Well, if at least I can raise awareness and raise money, and use my my platform — it was very nascent at the time, but, you know, somebody was paying attention! So it was like, whoever’s paying attention? Let’s talk about MS.”
MS comes with a wide range of symptoms and each person’s case looks different, but it can affect every aspect of life. According to a recent survey from Genentech, 71 percent of people living with MS say it affects their overall quality of life, while 70 percent says it impacts their work or career. The numbers are nearly as high for the effect on mental health (65 percent), finances (62 percent), and romantic life (60 percent).
As debilitating as the disease can be, getting the right care can be life-changing — though even that is a challenge. In the same survey, many patients listed finances and their race and ethnicity as barriers to care; the numbers were highest for Hispanic patients (33 percent said finances were a barrier, 20 percent said race/ethnicity were a barrier).
Those structural barriers are real and not always possible to confront on an individual basis, but Arzón believes patients still have power. “Keep asking questions, remaining curious and persistent,” says the fitness pro, who has a chronic disease herself (Type 1 diabetes). “I am willing to ask a question until I get the answer, and I refuse to be viewed as a statistic,” she continues. “I hope it just provides an example for folks to continue to ask, why not me? We should be listening to our medical providers, spotting signs, educating ourselves on trends. And statistics exist for a reason — they can be helpful. But I don’t think that we should stop there in the conversation, if we have a nagging feeling that that’s not the answer for us or that’s not the path for ourselves or our families.”
Arzón says her mother’s experience with MS has had a major influence on her own life. “I’ve seen her good days, I’ve seen her bad days, and that she always brings such an immense amount of resilience and gratitude for the moment,” she says. “I try to inherit that, [and remember that] even my worst workout is still a good workout… So I try to remind myself of that, because it is not a given. I know lots of folks with MS who are incredibly resilient but really debilitated. And thankfully, my mom is up and moving. She’s still able to ride and go for short runs. I’m very, very grateful for that, but I inherited, I think, her resilience and her gratitude.”
These days, Arzón says her mom is living life to the fullest. “She’s doing really well,” Arzón says. Becoming a grandmother, she adds, has given Carmen “such renewed focus and energy” — a massive shift from the early days of her MS. “There were holidays where … she was a shell of herself,” Arzón remembers. “And now 20 years, 20 years older, she’s more vibrant than she ever was. So it is possible to maintain hope, and it can get better.”
Before you go, read about these stars who’ve shared their own chronic illnesses: