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Living with multiple sclerosis is a journey that comes with challenges, but for African Americans, those challenges can be even greater. From delayed diagnoses to disparities in healthcare access, the Black MS experience is uniquely shaped as much by systemic barriers, as it is by cultural perspectives, as well as the strength of a community that supports and uplifts its members. Two powerful voices in the MS community – Diana Maisonneuve and Damian Washington – share their stories, offering insight into what it means to navigate life with MS as a Black person.
For many African Americans, the road to an MS diagnosis is filled with obstacles. The misconception that MS primarily affects white individuals has led to delayed diagnoses and misdiagnoses for Black patients. Maisonneuve – diagnosed at nine years old – knows firsthand the difficulty of navigating a healthcare system that wasn’t prepared to recognize MS in young Black individuals.

Diana Maisonneuve

Damian Washington

“My journey, from diagnosis to developing a less-than-conservative approach to medicine, has broadened my understanding and fueled my commitment to creating positive change,” she said.

Washington echoed this struggle. His symptoms were apparent, but many doctors failed to connect them to MS. “When I first had symptoms, most of the doctors I saw knew something was off with me but didn’t know what it was. It took an eye doctor suggesting an MRI for me to finally get answers. That kind of runaround is common, especially for Black patients.”

Navigating the healthcare system

Beyond diagnosis, access to quality care remains a major hurdle. Studies have shown that Black MS patients often experience more severe symptoms, yet they are less likely to be prescribed the most effective treatments. The lack of Black neurologists and MS specialists adds another layer to the challenge, making it difficult to find medical professionals who fully understand the nuances of treating MS in African American patients.

“I have encountered numerous challenges within the healthcare system due to being African American and the age of my onset disability,” Maisonneuve said. “I had to figure everything out from scratch, learning to slow down, readjust, and cultivate a willingness to learn about myself and this anomaly.”

Washington emphasized the importance of self-education and persistence. “Not everyone can get the best medicines or doctors, so I had to prioritize my own understanding of my health. I researched unconventional methods of care and kept going until I got what I needed.”

The power of community and cultural strength

Despite the difficulties, community support plays a crucial role in resilience. Maisonneuve credits her growth to the unwavering support of family and friends. “I’m living proof that meaningful connections and a willingness to evolve can spark profound transformation. If I can harness this potential, I believe others can too.”

For Washington, family and culture have been both grounding and empowering. “My family lets me do me — my diet, my rest, my meditation practice. But they also remind me to slow down. And the Black MS community? That’s like a second family. They understand exactly what I’m going through.”

Taking control of the journey

Both Maisonneuve and Washington stress the importance of self-advocacy and community support for Black individuals newly diagnosed with MS.

“Take ownership of your journey,” Maisonneuve said. “Set boundaries, prioritize your well-being, and remember that while doctors are experts, you are the expert of your own body. Do your research, seek diverse opinions, and advocate for yourself.”

Washington encouraged finding strength in community. “MS might feel scary, but there are people out there — people who look like you — who have gone through it and are living full lives. You are not alone. Find doctors who listen, don’t ignore your symptoms, and connect with others who understand what you’re going through.”

A call for inclusivity

Creating an inclusive space for the broader MS community means listening to diverse experiences and ensuring that Black voices are heard. Washington puts it simply, “Share your story, listen more than you talk, and be present for other patients however possible.”

Maisonneuve’s book, “My Tiny Spotted Mind, Too Young for MS,” focuses on marginalized voices and provides a platform for those whose experiences are often overlooked. “I believe it’s essential to amplify voices that have been historically marginalized. My book is a testament to resilience, determination, and the strength that carries us through life’s challenges.”

Empowerment through awareness

The Black experience with MS is one of resilience, advocacy, and the power of community. While systemic challenges persist, individuals such as Maisonneuve and Washington are paving the way for greater awareness, earlier diagnoses, and more inclusive care. Their stories remind us empowerment comes through knowledge, self-advocacy, and the strength of a united community.

By amplifying Black voices in the MS conversation, we move closer to a future where every patient receives the care, respect, and support they deserve.