Performers with multiple sclerosis face a unique set of challenges in the entertainment industry. Here’s what actors and experts have to say about becoming an actor if you have the disease.
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Multiple sclerosis (MS) is a disease that impacts the central nervous system. According to the National Multiple Sclerosis Society, it’s immune-mediated, meaning that “an abnormal response of the body’s immune system causes the disease. In this case, the immune system attacks the central nervous system (CNS) by mistake.” The damage that MS causes results in a variety of symptoms, many of them related to disruptions in the flow of information within the brain and between the brain and body.
While no one knows for certain what causes MS. But according to the NMSS, “scientists believe that a combination of factors triggers the disease.” Researchers are currently studying the link between certain genetic defects and exposure to viruses like Epstein-Barr.
Some epidemiologists suspect that geography may play a role, as people who live farther from the equator are more likely to develop MS. Low vitamin D levels could also be a contributing factor. Research is ongoing to pinpoint why MS develops in some people and not others.
According to the NMSS, almost 1 million people in the U.S. have MS. Although most are diagnosed between the ages of 20 and 50, the disease can also present in young children and older adults. Multiple sclerosis is three times more prevalent in women than men.
There is currently no cure for MS, but there are treatments that can help slow the progression of the disease and speed up recovery from relapses of symptoms.
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Disease variation
People living with MS have periods of relapse and remission, meaning that symptoms come and go; this varies widely from person to person and over time. There are four different types of multiple sclerosis, each with different symptoms and expectations for long-term outcomes.
“One of the hardest things with MS is that it is not consistent—some days you feel great physically and/or emotionally, and others you really don’t,” says Samantha Salvaggio, a chronic illness health coach based in Hillsborough, North Carolina. “Plus, a lot of the symptoms can be invisible, so it is hard for others to understand the ups and downs. For the person with MS, that variability often feels like you are on a roller coaster that you have limited control of.”
Salvaggio speaks from personal experience: She herself was diagnosed with MS 17 years ago. “Existing in that gray space where you can’t always control how your body or mind feel day-to-day requires a lot of flexibility, acceptance, letting go, and compassion,” she says.
Heat tolerance
Since heat intolerance is a symptom of the disease, actors with multiple sclerosis may find it particularly challenging to work under bright lights and in roles that require strenuous physical activity.
“Heat intolerance is when any symptom worsens due to the core temperature rising by at least half a degree,” explains Gretchen Hawley, a physical therapist and certified MS specialist. “Unfortunately, lots of things can increase our core temperature, such as exercise and moving around, hot lights, and the temperature outdoors.” An increase in heat can cause nerve signals to travel even more slowly, temporarily worsening symptoms.
Actor Ann Marie Morelli, who lives with MS and uses a wheelchair, says working in a warm environment can definitely be difficult. “I’ve had the unfortunate experience of playing a character wearing a wool costume and a wig,” she says. “Getting overheated can make me very stiff and tired.”
Fatigue
The notoriously long days associated with acting can exacerbate MS symptoms. “Once fatigue and/or heat intolerance kicks in, other symptoms can worsen, including difficulty walking, sensory changes, vision changes, pain, worse balance, and others,” Hawley says. “Working long hours or not getting enough sleep could significantly impact fatigue, making it difficult to continue working and sometimes difficult to think, which could potentially affect memorizing lines.”
Audience misunderstanding
Theater Breaking Through Barriers is an Off-Broadway company that focuses on championing artists with disabilities. “Casting people with visible disabilities can sometimes surprise an audience,” says Nicholas Viselli, the artistic director of TBTB. For example, because most audiences aren’t used to seeing a wheelchair onstage unless it’s explicitly part of the story, they may get caught up in thinking about why that character is in a wheelchair.
“Our theater is one of only a few professional theaters in the country dedicated to advancing writers, actors, directors, designers, technicians, and administrators with disabilities and changing the image of people with disabilities,” says Viselli. “We do shows with all kinds of disabilities. But if we are doing our jobs correctly, you won’t notice our disabilities if they are not part of the storyline; the disability will be there, but it won’t matter.”
Inclusion
According to a 2022 Nielson report, approximately 26% of the U.S. population have a disability, while only 4.22% of all video content includes themes of disability.
“Increasing inclusion across media is important,” the report reads. “It’s not surprising that nearly 50% of people with disabilities feel their identity group is underrepresented on TV.”
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Manage the heat
Hawley advises actors to sip ice water and wear a cooling vest, headband, or wrist wraps ahead of a performance or rehearsal. The NMSS recommends staying in air conditioning whenever possible, wearing breathable clothing, and taking a cool bath following vigorous activity or exposure to a hot environment.
Plan ahead
“You may have to modify or adjust your work schedule so that you work during your peak hours where you feel your best,” Hawley says. While actors may not have complete control over this, having an awareness of what time of day you generally feel your best can help you arrange your to-do list to meet your capabilities.
Exercise
Hawley says that one of the best things you can do when you have MS is to incorporate a functional workout into your routine. “Pick a goal that you have—for example, standing for an hour—and practice standing for longer intervals,” she says. “Or if you have a goal of maintaining or improving your walking, break down walking into as many [discrete] movements as you can—[for example,] bending or lifting your knee and balancing on one leg—and practice those movements as your exercise. This will not only strengthen your muscles—it will strengthen your neural pathways, which is essential.”
Keep going
Hawley says that staying active and continuing to work is always a great idea. “If you’re having a day where you need to hibernate, do it—but try your best to not make a habit of it when possible,” she advises. “The more you participate in your normal daily life, the less isolated you’ll feel and the more movement you’ll get.”
“You just have to do it,” Morelli says. “Everything is about planning, so you will need to prioritize.”
Salvaggio concurs. “It’s a hard adjustment, and I would argue that the ups and downs will always be there,” she explains. “However, over time, you learn that the hard times won’t be around forever, and you find comfort in knowing that you have made it through all the challenges thus far and this time will be no different. In no way is it an easy road, but there are ways to adapt and find joy.”
Ask for what you need
“Communicate and talk openly about your disability as you are comfortable,” Viselli says. “Disclosure is important; that allows people you are working with to know what your needs are.”
Morelli agrees. “Right now, I have issues where my right arm is weaker than my left arm,so I need to let my colleagues know what support I will need.”
If you feel guilty about asking for help, keep in mind that everyone needs accommodations sometimes, not just those with disabilities. “I worked with a vegan who was supposed to eat a steak onstage, which wasn’t possible,” Morelli recalls. “So he asked the crew to substitute that prop for something vegan that he could eat.” The bottom line? “Don’t feel bad about asking.”
Advocate for inclusion
“Theater is supposed to represent life and humanity,” says Viselli. “It is very commonplace to have a disability, especially the longer we live. By not including people with disabilities, you are not telling a true story. And more importantly, from an artist’s perspective, you are shutting out an important group of artists with amazing life experiences.”
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Actors who have spoken publicly about their MS diagnosis include:
- Christina Applegate (“Dead to Me,” “Bad Moms”)
- Selma Blair (“American Crime Story,” “Cruel Intentions”)
- Jamie-Lynn Sigler (“Big Sky,” “The Sopranos”)
- Teri Garr (“Young Frankenstein,” “Tootsie”)
- David Lander (“Laverne & Shirley,” “Scary Movie”)
- Emma Caulfield Ford (“Buffy the Vampire Slayer,” “WandaVision”)