Actress Brandee Evans Is Bringing MS—and Caregiving—Into the Spotlight

The 'P-Valley' star opens up about becoming a caregiver to her mother.

If there is one life lesson actress Brandee Evans has learned after becoming a full-time caregiver, it’s this: “Everyone is dealing with something,” she tells Parade. “Be gentle with them and with yourself.”

An accomplished dancer and choreographer, Evans has the kind of magnetic, can’t-take-your-eyes-off-her talent that has propelled her from the stage to the screen—including her star-making performance as Mercedes on the Starz original series P-Valley. But what many have not seen is the role she never auditioned for but was called to perform: that of caregiver for her chronically ill mother.

Evans was fresh out of college when her mother was diagnosed with multiple sclerosis—a progressive autoimmune disease that attacks the nervous system. But it wasn’t until Evans’ mother fell and was admitted to the hospital that she realized how much MS would change both of their lives. “All of a sudden, [my mother] couldn’t walk anymore. This woman who did everything on her own—she had her own place, drove her own car—all of that stopped,” she says.

Related: Subtle Symptoms of MS Doctors Want You to Know About

Eager to share what she’s learned with others, Evans is lending her voice and sharing her experience with #MSVisibility, an initiative working to better raise awareness of MS in the Black community and provide culturally relevant resources to enable better MS care.

From Misunderstanding to Adjusting to a New Reality

Multiple sclerosis (MS) is a progressive disease that happens when a person’s immune system behaves abnormally and attacks the brain, optic nerves and spinal cord. A 2017 study reported that nearly one million people in the United States are living with MS, with women four times as likely to develop it than men.

Diagnosing MS can be tricky because the symptoms can vary—and not everyone will experience the same things at the same severity. In the early stages, numbness, muscle weakness, poor coordination, eye pain and blurry vision can occur. As MS progresses, fatigue, loss of bladder control, cognitive impairment, pain and partial paralysis are common.

Looking back, Evans realizes that her mother was experiencing the symptoms of MS for years before she received a proper diagnosis. “She was always talking about the pain in her hands,” Evans recalls—something her mother, who worked as a secretary, dismissed as carpal tunnel syndrome. Then, she began experiencing frequent fatigue—another possible sign that was attributed to menopause. But then she began having frequent car accidents—which likely was the result of a loss of coordination.

Still, Evans admits she was in deep denial. “To me, my momma was always Superwoman, you know? I wasn’t believing that she was as tired as she said she was, and it took me a while to understand that her symptoms were going to get worse, not better.”

<p>Courtesy Brandee Evans</p>

Courtesy Brandee Evans

Managing the Costs of Full-Time Caregiving

Evans' mother's MS progression meant she needed to transfer from the hospital into a rehabilitation facility—and that didn’t sit right with Evans’ spirit. “I always said my mom would never end up in a nursing home,” Evans recalls. She felt guilty but then started planning to bring her mother to live in Los Angeles with her—even though she was in between jobs at the time.

The transition wasn’t easy. One major challenge? Harrington was no longer able to walk, so Evans had to prepare her apartment to accommodate her mother’s needs. To do that, she essentially recreated the nursing home environment in a smaller space—and that required expensive specialized equipment.

“I put up a GoFundMe (campaign)…I was just really transparent, I said I need help, y'all anything helps.” She asked celebrity friends to repost her campaign to their social media accounts in the hopes of getting as many people to see it as possible. The result was better than she could have imagined—in four days, she raised over $14,000.

That money helped Evans move next door into a bigger apartment and transport her mother across the country. Next, Evans worked with her mother’s medical team to learn how to manage her daily care. “I followed the caregivers at the nursing home around and took notes,” she explains. “I asked my nurse friends for tips, and I sought out advice in online support groups. I wanted to be as prepared as possible to take care of Momma myself.”

Related: Cancer Survivor Robin Roberts Is Passionately Pushing for Equality In Healthcare

Advocating for MS Awareness and Support

Research has shown that fifteen percent of people with MS are Black. The age at which Black people are diagnosed is also older than that of white people and other ethnic groups, and they are more likely to experience more severe symptoms and have faster disease progression, including an increased risk of secondary progressive MS. However, the “face” of MS in the medical community and in the media has long been that of a young, white woman—and that, Evans says, is a barrier to awareness and early diagnosis.

“I just didn’t see anyone who looked like my mother when people were talking about MS,” Evans says. “And I want to change that.”

Evans has become a caregiving advocate so others don’t feel alone in the journey. “I can tell someone what the day-to-day challenges of being a caregiver are, but I want to show people, to normalize it,” Evans states. “This is what it looks like.”

Using the power of social media, Evans shares everything from how a hairdresser accommodates her mother’s weakened neck muscles during a hairstyling session to how she had a shower hoist installed in her bathroom so she could safely bathe her mother.

“When Momma couldn’t stand or bathe herself anymore, doing that safely was a real concern,” Evans explains. “I have a small bathroom and couldn’t do a renovation, so I had to find a way to get her in and out of the shower that worked in that space. Safe bathing is a real issue for caregivers, and I wanted to put that video of the Shower Buddy out there showing what it looked like and how I practiced using it so that other caregivers could see for themselves how it worked.”

To further open the dialogue about caregiving and multiple sclerosis, Evans sat down with #MSVisibility to participate in the Breaking Barriers video series (available on YouTube). “Making MS more visible is exactly what we need to do,” Evans explains. “I didn’t even know what MS was when my mother was diagnosed. I didn’t know anyone who had MS, and I didn’t know about the visible and invisible symptoms. I wasn’t realizing that this was going to be something that Momma was going to be living with for the rest of her life.”

In the videos, Evans chats with doctors and MS patients about “The Truth About the Black MS Experience,” “The Power of Self-Advocacy” and “The Strength in Vulnerability.”

“It was empowering to hear what these women had to say, and I hope viewers will walk away from these videos with validation and the tools they need to talk to their families and their doctors about MS,” Evans says. “Sometimes you just need to hear someone else’s experience to be able to gather strength and get the care you need.”

Related: 10 Best Resources for Caregivers

The Importance of Taking Care of the Caregiver

Landing the role on P-Valley gave Evans the ability to hire help, but she was still dealing with her feelings of fear, guilt, exhaustion and anger. “I was mad at MS,” Evans tells Parade, confessing that she once punched a wall out of sheer frustration. “I was so mad that my Momma wasn’t my Momma anymore. I didn’t want her to see me cry because I didn’t want her to think that I didn’t want to take care of her.”

Evans turned to therapy, which in helping her realize the importance of taking care of herself. “I felt guilty about doing things that weren’t work-related,” says Evans, who recently took her first vacation in years and returned home feeling rejuvenated. She now regularly makes time to go hiking and have girls’ days with her friends. “I had to get out of my own head and say that didn't make me a bad daughter to do things that don't involve Momma. It’s normal to feel that way.”

Evans readily admits that becoming a full-time caregiver was a role she wasn’t prepared to play. “I wasn't ready,” she confessed. “I just want to share that with others, to let them know that you're not alone if you feel you're not ready. If you feel that this is confusing and hard, and it's difficult to understand, it's normal. There is support out there, so reach out and get the support you need to be the best caregiver you can and to take good care of yourself.”

Next up: 7 Steps to Help You Become a Caregiver