In the few short years since Reese launched her #WeAreIllmatic campaign — in August 2017 —participation has flourished. According to Reese, there are now about 1,500 members in the private Facebook support group, with many more on Instagram, and many of them younger millennials. Reese used her marketing skills to power her awareness campaign. “It was very heavily marketed to the audience that I felt no one had been speaking to or trying to reach,” says Reese. The response, she says, was “overwhelming.” “Many women who were joining said the same thing that I had said — that they had been looking for a community of Black women or a community in general, and that they had never met virtually or in person another Black person or a Black woman who had MS.” Some of the women who joined were diagnosed years, even decades, ago, says Reese. “They thought that they were a minority within a minority; the saying ‘Black people don’t get MS’ was a thing, and it still is kind of a thing,” she says. But that “thing” is changing: “Now we’re speaking about how many people are actually getting it who are of African American descent, but [back then], a lot of people just felt that they were the only Black person who had MS, so they didn’t even look for a community.” RELATED: MS in Black Americans: Research Challenges Old Beliefs
A Nonprofit Patient Advocacy Group Aims to ‘Redefine What Sick Looks Like’
Reese was inspired by the success of her campaign. “When I saw how happy so many people were to find a group like ours, I knew that I needed to do more, and I knew that I couldn’t just leave it as an awareness campaign,” she says. Reese has continued her advocacy work by sitting on various advisory boards and working with a number of patient advocacy organizations and pharmaceutical companies, not just to navigate the space but also to have a seat at the table, learn as much as she can, and share that knowledge with the community, says Reese. She’s also partnered with Lauren Hutton-Work, who was a part of #WeAreIllmatic, to create We Are Ill (WAI), a nonprofit patient advocacy group that aims to “redefine what sick looks like” and “support, educate, and unite Black women who have been diagnosed with MS.” WAI hosts virtual support groups, offers information and resources, and partners with healthcare companies and organizations to create inclusive content that directly speaks to and supports Black women. Reese points out the importance of representation in the information that’s presented to African American people with MS. “If there is a pamphlet on MS, does it include pictures of a Black person? Does it include a picture of a millennial or an able-bodied Black person?” she asks.
With Growing Awareness Comes the Need for Increased Participation
Along with the growing awareness among the medical and patient advocacy communities that MS does, in fact, affect Black Americans, Reese notes that more African Americans with MS are knowledgeable about MS and are following the science and what the experts are saying. But she acknowledges that there’s still work to be done to boost inclusion and participation. “Now that the information is out, the African American community that is affected by MS can hold the MS community accountable for getting more information and more research, but also hold themselves accountable by being part of the conversation and by taking part in the science and the medical research that’s being done,” says Reese. “If we want more information and to be included in the narrative, then we’ve got to also participate in that narrative so that science can help further educate us in how we are affected by MS or how many of us are affected by MS,” she says. One study that will look at how Black and Hispanic Americans, specifically, are affected by MS is the CHIMES (Characterization of Ocrelizumab in Minorities With Multiple Sclerosis) study, which is recruiting participants now.
Being Black With MS: Contending With Larger Issues While Living With MS
For Reese, any advocacy for African Americans with MS has to acknowledge the fact that the issues people in this community face are inextricably linked to the greater concerns that the Black community at large is grappling with today. “Being Black with MS is being Black,” says Reese. “The issues that Black people are facing, that Black women are facing, are not different just because you have MS; it just adds an extra level to it because you’re dealing with an autoimmune disease, and you’re dealing with the healthcare system more intimately.” Then there’s the specter of discrimination and disparities in healthcare, with long historical roots. Reese cites examples of unequal medicine, such as the pernicious myth that persisted for years that Black people have a higher tolerance of pain; the higher maternal mortality rates among Black women and certain other people of color; and the fact that many Black people reside in communities where the hospital or the quality of the healthcare may not be that great due to socioeconomic disparities. But she notes that the world is paying more and more attention to the social injustice that the African American community at large contends with every day. “Whether you’re a Black woman with diabetes or breast cancer or MS, we all feel that same heavy burden of just being fed up,” says Reese. She recommends speaking to your community, “whether it’s your career industry or your MS community,” and drawing attention to the issues. “Now is our time, and we’ve got everybody’s attention, so let’s hold people accountable, and let’s clearly say what we expect of them,” says Reese. RELATED: Race-Adjusted Medicine May Deprive Black Patients of Treatment
How to Increase Participation in Research in the Face of Medical Mistrust
In September 2020, Reese spoke on the topic of medical mistrust among the African American community and the resulting lack of participation in her breakout session, called “State of the Black Woman,” at the National Multiple Sclerosis Society’s Black MS Experience Summit. “I gave some bullet points on what we wanted to do as an organization to tackle these issues, and one of the first ones was to address the elephant in the room,” says Reese. “When it comes to medical mistrust [and historical events such as] the Tuskegee syphilis experiment and Henrietta Lacks … How do we handle that elephant in the room from both sides?” Reese says there needs to be an open and honest discussion about the events that led to the understandable lack of trust among African Americans in order to find solutions and paths to healing. “I don’t think there’s any one remedy, but I think talking about it helps,” says Reese. The African American MS community as well as doctors, scientists, pharmaceutical companies, advocacy organizations, and others in the MS space need to recognize the fact that many Black people — understandably — are leery of clinical trials. “But if we’re avoiding it, now we’re not being included,” notes Reese. Then, she points out, that will lead to the Black MS community not getting research done on how things affect them, and then being impacted by not having this type of information. “We have to be part of the things we want,” says Reese. “We have to be part of the change we want to see.”
Flexibility and Empathy Help When Living With MS
On a personal level, Reese has reached an acceptance not only of her disease but also of the need to adapt to changes that may come with her condition. “It’s an ongoing process,” says Reese. “Because MS can be so unpredictable, I try to live a very flexible life and have a flexible mindset where I can accept and move with how MS moves.” She notes that she has “graduated to a different level of understanding of what it is to have MS,” and adds, “as I age, I’m not expecting the worst, but I’m also mentally prepared in case things don’t go how I imagined them to be.” Reese is also focusing on empathy, both toward herself and other people. “I’m learning every day how to be gentle with myself and with others, even people who don’t have MS. There’s the discipline aspect of it — taking your medicine and staying on top of your diet, and making sure you’re physically active,” says Reese. “But there’s also the emotional and mental aspect of it.” One of the most challenging parts, she notes, is having to deal with the way that other people can react to your MS, such as when people question or judge your need to use a handicap parking spot. “If you have an unpredictable illness like MS, you might be fine going into a store but not fine coming out,” notes Reese.
The Value of Seeking Out Therapy
As for tips she shares with others, she recommends seeing a therapist — something she notes that members of the African American community traditionally haven’t turned to, since church and religion was considered to be the answer to mental health needs. “In general, the number-one tip I always encourage is to go to therapy,” says Reese. “I think it’s so important for anybody.” Reese says she had her own personal epiphany about therapy when people began to seek her advice about how to navigate MS, or help someone they love with MS. “When I realized the heavy load of that, I decided to make sure I have my experience and my journey intact before talking to anybody,” says Reese. “I realized that I can’t carry other people or support other people or be positive for them if I was not emotionally healthy myself.”
Helping to Bridge the Gap
Reese plans to continue her work as a patient advocate and hopes that her organization can help bridge the gap between the community she has helped to organize and the larger MS community. “We want to tackle some of the issues that the Black community is having, but also the issues that our go-to resources are having connecting with the African American community,” says Reese. “Pharma companies and patient advocacy organizations are struggling with recruitment for things, or struggling with how to talk to the Black community, and we’d like to continue to be part of that conversation and help,” she says.
