What I Wish I Knew About Multiple Sclerosis in the Black Community

Multiple sclerosis (MS) is believed to impact nearly 1 million people in the U.S. People with the central nervous system disease can experience a range of symptoms, including numbness, mobility issues, and difficulty swallowing. The symptoms can be mild to severe. Brandee Evans’s mother, Diana Harrington, falls into the latter category.

Before her 2004 diagnosis, Harrington had been experiencing numbness and tingling. At first, Harrington was misdiagnosed with carpal tunnel, a nerve condition that can cause numbness and tingling in the fingers. But then the sensations spread to other parts of her body, like her legs. Harrington was also struggling with falls and memory issues. “We just thought, ‘Oh, Mom is just overwhelmed or working too hard,’” Evans told Health. 

As her symptoms worsened and spread, Harrington was referred to a neurologist who eventually diagnosed her with MS. 

It turns out that Harrington had a type of MS called secondary progressive MS, meaning her condition would steadily worsen. 

Today, the 69 year old requires constant care. Evans, star of the show “P-Valley,” serves as her mother’s primary caregiver. It is a role that requires Evans to be up at all hours of the night to assist her mother. 

“I don’t sleep when I’m there… I have to get up every two hours—I have an alarm that’s set—to make sure she’s not wet,” Evans said. Her mother is now incontinent. She can have muscle spasms that cause her to sweat. She has lost the ability to control her saliva. “I want to make sure that she doesn’t have secretions down her clothes which can cause her to be wet.”

Over the years of caring for her mother, Evans has learned to become more comfortable relying on others for help. It’s been a journey to get to this point in her caregiving role, according to Evans, and there are a few things she’s learned along the way that she wishes she had known in the beginning—especially as a Black caregiver to someone who is Black.

What do you wish you had known during your mother’s journey to diagnosis?

Brandee Evans: Once she was diagnosed, we thought, ‘There is no way.’ My mom works and drives. I know I was in denial. I thought, ‘Not my strong mom. She’s perfect. She works out. She drank her water.’ But I talked to a friend who said, ‘I just want to be honest with you. My aunt with MS ended up in a wheelchair.’ That’s when I started thinking that maybe this is something serious. My mom was dramatic, and I thought Mama was looking for attention. I wish I had known then what I know now. I would have had more empathy. 

What do you wish you had known about how multiple sclerosis impacts people in the Black community?

Evans: I believe MS is overshadowed a bit in the Black community, and we don’t realize how it affects us differently. 

No one talks about it. We hear about cancer. Why is no one talking about MS? There have been a lot of people who have had it, and we just didn’t know what was going on. 

Through the #MSVisibility: Breaking Barriers campaign, [which aims to drive diversity awareness and resources for MS—Evans is a spokesperson], I’ve had an opportunity to sit down with some Black women in the MS community. I learned that you can have MS that looks very different from my mom.

What do you wish you had known about caregiving before taking on that role?

Evans: I wish I knew to ask for help first, that I didn’t have to do this by myself. I wish I knew about all of the different programs that were out there to assist. One thing the government does have, especially in California [where my mom and I are], is a lot of benefits. However, [the government is] not just going to tell you. You have to go looking for it.

At one point, before I got a big job with benefits, I didn’t think we were going to make it. There were days where I wasn’t eating, but Mama did. I just thought, ‘I’ll just fast for now.’ I wish I knew that when my family members weren’t stepping up that it wasn’t that they didn’t care. It was hard for them to understand this disease. I thought I had to do it by myself and that no one cared.

How do you think race played a factor in what you have experienced as a caregiver?

Evans: The sad thing about it is that many doctors were not taking [my concerns as a caregiver] seriously. 

[Recently, doctors] finally did run a urine lab for my mother to tell that she had a [urinary tract infection] UTI with different bacteria [from what they had suspected]. I said, ‘Something’s not right. Come and run her urine,’ but they wanted to brush it off. I finally found that the medication they prescribed for my mother wasn’t working against the type of infection she has. 

This is the type of fight we have to have—two other caregivers and me to say, ‘Hey, we’re not making stuff up.’ I’m still fighting this. They don’t believe us or brush us aside.

What do you wish you had known about community resources for Black caregivers before you took on this caregiving role?

Evans: I had a stillbirth once, and I had to think back to how I got through that. I did it through different groups online. I thought, ‘I bet they have groups for MS.’ I found different groups for MS, and that’s how I realized that there can be a day where Mama can be so tired that she doesn't move or doesn't eat. It doesn't mean she's about to die. One woman said, ‘My children thought I had passed; they could not wake me up.’ That happens with my mom. I did the different things [the women in the online support group] had told me to try. No doctor understood; they're like, ‘Call 911.’”

What do you wish you had known about caring for yourself as a caregiver?

Evans: I used to think that you are not a good daughter if you leave the house and that I should be in that house with her all the time. But I’m going to lose my mind if I stay in that house every day. I know my mom would not want me to live like that. I went on vacation. I’m taking time for me. Even if it means going to lunch. Trust the people that you hire to help. Sometimes I leave and I don’t have crap to do but walk around Walmart, but it’s wonderful. I know that someone is there with my mom and that she’s OK… I found the right people and I’m trusting them.