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This African-American Woman With MS Wants Other Black Women to Know #WeAreIllmatic
Victoria Reese seeks to unite women of color who have MS and reduce the shame associated with the disease.
By Cathy Cassata
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Victoria Reese was living a somewhat glamorous, somewhat crazed life as an assistant at a talent agency in Hollywood when she began experiencing numbness in her legs and face.
"You've heard the ‘Hollywood assistant’ story being tied to stress. I just thought the symptoms were a result of living that stressed-out life. I didn't know at the time that stress was a trigger for MS flare-ups," Reese says.
After a misdiagnosis of depression, Reese was referred to a neurologist who recommended she have a brain MRI. The MRI revealed that Reese, then 25, had nine lesions on her brain. She was diagnosed with multiple sclerosis.
She tried two injectable MS drugs but experienced side effects. Two years after her diagnosis she switched to a pill, which she's been taking for three years now, with minimal side effects and rare flare-ups, or relapses.
"Aside from figuring out the best treatment, what was hardest about my diagnosis was that I didn't know anyone with the disease. And when I'd go to medical websites to look up information about MS, all the pictures were of Caucasian people. When I Googled 'black people with MS,' there was little information," Reese says.
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Creating a Support Network for Women of Color With MS
The lack of African-Americans represented in the MS world gave Reese the drive to make a change. In 2019, she got involved in the National Multiple Sclerosis Society (NMSS) in California, participating in walks.
"I'd go with my friends but didn’t see many other people of color. I felt like I was in a sea of Caucasian people," Reese says. "Unfortunately, in 2019, racism and exclusion still exist. But I also think culturally, many people of color, particularly African-Americans, may not have been taught to raise their hand and seek help in support groups or therapy to cope with illness. In our culture, we are spiritual, so we may pray about it instead of going to therapy."
To change this, Reese became an ambassador for the Southern California and Nevada chapter of the NMSS.
"I reached out to the MS Society to say, 'I'd like to be a face for my culture and tell our story,'" says Reese. "I was actively telling people on social media that I have MS, and when people learned that I was an ambassador, people started connecting me with people they knew who had MS or who were recently diagnosed. I became this go-to person."
The more Reese connected with other black women with multiple sclerosis, the more she realized that women of color needed a support network just for them.
"A lot of people know about the MS Society and that it does great things. But its primary goal is bigger than intimacy. It's focused on medical research and medications and finding a cure — all things we definitely need. But people don't always need a doctor; they need real support, healing, and community. They need a sisterhood," says Reese.
Empowering Women With MS: You Are Illmatic
From that notion, Reese's campaign, WeAreIllmatic, was born. She borrowed the name from the title of rapper Nas's debut album, released in 1994.
"Nas is legendary in the African-America community. I knew about his album Illmatic. It's a cultural word meaning you're dope, cool, or supreme," explains Reese. "All these years I was saying 'illmatic' and 'sick,' and I wasn't thinking about it as literally meaning you are ill or sick with a disease. I wanted to play on the empowered version of ill and sick. In other words, even though we have MS, we are still sick and ill and in power."
Nas gave Reese the go-ahead to use the name for her campaign. In August 2019, she launched her campaign with a video. That same day, Nas reposted the video to his 35 million followers on Instagram.
"If he had never reposted that, I would have just been a girl who blindly named our campaign this. Being able to say, 'look at what we're doing, and Nas supports it' gave us a little ammunition," Reese says.
Reducing the Shame Associated With Having MS
As part of the campaign, Reese started a Facebook page with a closed group where women can share ideas and concerns. She says all the campaign's social media presence helps to silence shame associated with MS.
"With any illness, a lot of people are ashamed of it. They are afraid to tell their employers for fear of getting fired, or their significant others because they feel like they may not be attractive to them anymore or that they won't want to stay with them long term," Reese says. "Emotionally it can be somewhat confusing when you have an invisible disease. You might look fine but feel horrible, or you're fine one day and the next day you're in the hospital. When you find your troop and community, they get all of this. By understanding, they help quiet that shame."
The campaign has encouraged women who have never talked about having the illness to do so on social media.
"This is a digital campaign, so the more women who share their story, the better. I can't bring awareness by myself," says Reese. "And it's working. It's empowering that women are accepting the challenge to share and by doing so, they are coping with MS."
Normalizing Therapy for African-Americans
Next up as part of her campaign, Reese plans to launch what she calls "MS State of Mind," a video of her in a therapy session with an African-American therapist. The women discuss stages of coping with an illness diagnosis.
"This will give other black women the chance to see what a therapy session is like — and that it's not just for other races or for crazy people. It's for anybody who needs help," Reese notes.
She hopes the more presence her campaign has on social media, the more women of color will be represented.
"My goal is that if you search 'MS' online, we come up in your search," says Reese. "And that more people become aware that not everyone with MS is in a wheelchair, or a white woman in her mid-forties.
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