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Victoria Reese Brathwaite knows multiple sclerosis can look like a beautiful young woman contemplating partnership and motherhood. She received a multiple sclerosis diagnosis in 2012. It made her wonder about her future living with a chronic illness.<\/p>\n
She faced a void of information. \u201cThe lack of representation is a big deal,\u201d she told Black Health Matters<\/em>. Multiple sclerosis (MS) patient outreach efforts did not reach her 25-year-old corner of the internet. A 2022 study<\/a> from the Journal of Neurology<\/em> found that MS. disproportionately impacted Black women. You wouldn\u2019t know it by what Reese Brathwaite found on the internet in 2012.<\/p>\n The faces of the patients she saw sharing information did not mirror her own. Searches for multiple sclerosis symptoms rarely churned out baddies with straight-back cornrows.<\/p>\n \u201cWhen you don\u2019t see yourself, which is a big part of my origin story, but [when] you don\u2019t see yourself in a health condition, especially one that you have to live with for the rest of your life, that really changes the trajectory of how you care for yourself,\u201d she said.<\/p>\n She founded We Are Ill<\/em><\/a>, a community-focused patient advocacy organization, in 2020. The seeds were planted in 2017, with the hashtag #WeAreIllmatic, putting a new spin on the face of illness.<\/p>\n Being a voice for others struggling was not something the Howard University graduate planned on. \u201cI started off as simply a patient advocate telling my personal story, so I had no idea I would start a nonprofit,\u201d she said.<\/p>\n We Are Ill<\/em> helps to bring the community together. They host an annual Wellness Weekend that brings community members together.<\/p>\n They are expanding their efforts to offer insights on lupus<\/a> and neuromyelitis optica spectrum disorder<\/a>, two other conditions that disproportionately affect Black women. \u201cWe\u2019re always trying to make sure that patient care is patient-centered,\u201d said Reese Brathwaite.<\/p>\n People form friendships with those who understand they may need to cancel a dinner due to fatigue and are unfazed by sudden spasms. \u201cProviding social connectedness<\/a> by community and fellowship that has proven<\/a> to lead to better health outcomes,\u201d she said. \u201cUnderrepresentation can impact healthcare access and hence result in poorer health outcomes in these populations,\u201d according to the International Journal for Equity in Health<\/a>.<\/p>\n Patient advocacy organizations can serve as connective tissue between the public and the services developed by healthcare firms. Reese Brathwaite noted that resources can be difficult for patients to access if they cannot be found.<\/p>\n She noted that global corporations may not be as adept at communicating with those who need their support as they believe. \u201cYou have all these different departments, and so whoever is working in patient advocacy might not be working in marketing,\u201d she said.<\/p>\n \u201cWe\u2019re also dealing with patients who are dealing with their own lives and children, work, careers, spouses, and health conditions. And so, it is a lot to ask patients to go and find and seek out another thing,\u201d she added.<\/p>\n They focus on showing up in the paths of those who need to learn. \u201cWe find them where they are.\u201d<\/p>\n Speakers at We Are Ill are briefed before engaging with the audience. The instructions are clear. Leave your pessimism at home. \u201cWe are not a \u2018Debbie Downer\u2019 community,\u201d said Reese Brathwaite. \u201cWe get enough of that.\u201d We Are Ill brings familiarity and glamour to learning about chronic illness. They include happy hours, spirited workout plans, and other activities that attendees might not expect at a healthcare conference. Attendees mill around in customized pilates socks and little black cocktail dresses. Speakers include Ashley Blaine Featherson and Jennifer Holliday.<\/p>\n \u201cWe are redefining what sick looks like,\u201d she declared.<\/p>\n They promote living full lives by developing programming that focuses on what is possible, not what isn\u2019t. \u201cWe had a session about intimacy and how we can help with intimacy issues, because that\u2019s a big issue in our community,\u201d she said.<\/p>\n Part of what We Are Ill does is challenge the stereotypes existing about Black women dealing with chronic illness. \u201cWhen we talk about underrepresented and underserved communities, there\u2019s an archetype that comes with it, and that is that everyone is low income, underinsured, uneducated,\u201d she said. \u201cWe are actively dispelling that by making sure we\u2019re tapping into our community and showing the representation accurately.\u201d<\/p>\n Assuming that chronically ill Black women can only be located in particular places ensures that some of them will miss out on messages they need to hear to improve their lives.<\/p>\n \u201cThese community members are savvy, educated, well-informed,\u201d she added. \u201cThey know their stuff. They just don\u2019t trust the healthcare system.\u201d<\/p>\n Stereotypes can work both ways. Medical mistrust due to medical gaslighting can cause Black women to put off seeking therapies that might improve their day-to-day pain. \u201cWhen we\u2019re not proactive about it, and we let it linger. We normalize it so much so that it is a part of our lifestyle, and it doesn\u2019t have to be,\u201d said Reese Brathwaite. \u201cProactivity saves lives.\u201d<\/p>\n Being Black women, Reese Brathwaite and her growing team are uniquely positioned to address apprehensive patients. She knows they are speaking to her 25-year-old self in her work.<\/p>\n \u201cWe already understand some of the barriers that just exist naturally.\u201d<\/p>\n Resources<\/p>\n Journal of Neurology<\/a><\/p>\n World Health Organization<\/a><\/p>\n CDC: Social Connection<\/a><\/p>\n International Journal for Equity in Health<\/a><\/p>\n \u00a0<\/p>\n \n<\/div>\nFrom Patient Advocate for Nonprofit Leader<\/h2>\n
How We Are Ill<\/em> Provides Support<\/h2>\n
Challenging Stereotypes About Black Women and Chronic Illness<\/h2>\n