os Angeles-based entrepreneur Victoria Reese is an Instagram influencer. The CEO of the Victor Group LA, a boutique brand and creative consultancy, uses the platform to showcase women in charge. She also shows us something we’re all too used to seeing in our feeds: Carefully curated photos documenting the lives of inspirational, stylish creatives.
But Reese is also leveraging her 10,000-plus Instagram followers to showcase something real: Living with an illness that cripples the central nervous system.
In 2012, Reese was diagnosed with relapsing-remitting multiple sclerosis, the most common type of MS. But when she looked at the community dedicated to fighting the disease, she saw few women who looked like her.
Reese started #WeAreILLmatic— a hashtag-driven campaign that lives on social media — to redefine what sick looks like, particularly for African American women.
The campaign was inspired by “Illmatic,” a 1994 album from the rapper Nas. These women are literally living with an illness, without losing their illness. They are, as Reese puts it, badass.
“We may be ill but we are still dope,” is the group’s mantra.
After her diagnosis, Reese immediately became involved in fundraising and advocacy. She participated in local Walk MS fundraisers, organized by the National Multiple Sclerosis Society, with her friends’ support. At every walk, Reese noticed they were the only African Americans in attendance.
“I didn’t [initially] set out to create a community, but the more I started going, the more I really didn’t see representation that was like me,” Reese said.
About 2.3 million people worldwide are affected by MS, according to the National Multiple Sclerosis Society. While MS typically affects white women, a growing body of research shows that the disease heavily impacts African Americans too.
A 2013 study published in Neurology found that black people had a 47 percent increased risk of MS compared with whites. Among African Americans, women had triple the risk of MS compared with men.
MS isn’t the easiest disease to define or diagnose. Symptoms are wide-ranging and often go unreported and undiagnosed. There are varying symptoms of the disease, which include, most commonly, fatigue, walking difficulties, numbness or tingling, involuntary muscle spasms, weakness, vision problems, dizziness, bladder problems and depression.
Researchers aren’t exactly sure how many people in the United States have MS, said Dr. Mary D. Hughes, the National Multiple Sclerosis Society’s African American advisory council chair.
“We’ve been saying 400,000 for probably ten years,” Hughes said, “and there are some initiatives underway now to quantify how many people have MS.”
For Reese, it is important to see that there are women of color living with MS, so that African Americans can envision what they’ll look like living with the disease when they’re 60, or so that they can simply share experiences and journeys.
When Reese officially joined the National Multiple Sclerosis Society as an ambassador, she began to spread awareness about MS on her well-followed social media platforms, discussing the chronic pain and fatigue that impacts her daily.
She was intentional about using her reach to raise awareness. Other women of color across the country began to take notice.
“Women were reaching out left and right on social media … and [saying], ‘Oh my God, I’ve never met or talked to another black woman who has MS,’” Reese said. “The reason why people are flocking to me, just a regular girl who has it as well, is because there needs to be something. There is nothing out there for us.”
Reese felt compelled to do something. With some extra encouragement from her mom, she began building #WeAreILLmatic. Online, she carved out a space for women of color with MS.
“#WeAreILLmatic has been a great reminder that I am not alone in this fight,” said Dawnia Baynes, who was diagnosed with MS in 2006 and appears in #WeAreILLmatic’s social media campaigns.
Baynes met Reese when they were flying to Sacramento, Calif., to advocate for prescription drug tax transparency, family caregiver tax credit and the American Heath Care Act and Affordable Care Act’s effect on people with MS.Baynes, who is also an ambassadorfor the National Multiple Sclerosis Society, shared that while there are many who have seen the void in outreach to women of color with MS, few could have executed a communications campaign as flawlessly as Reese.
#WeAreILLmatic recently kicked-off of its social media awareness tour. The campaign devoted a week in September to MS warriors, who shared their diagnosis stories on social media as a form of liberation and empowerment. The awareness tour will continue to drive awareness and conversation among the group of women and their support systems.
With #WeAreILLmatic, Reese is creating a digital sisterhood of support that inspires black women with MS across the nation.
To turn awareness into action, Hughes urges women of color to participate in drug and treatment trials. She said studies suggest people who participate in trials actually do better than those who don’t.
“They also have the opportunity to be exposed to a treatment [sometimes] years before it may come to the market,” Hughes said.