Navigating multiple sclerosis as a Black family

Mon 07 October 2024

Simone Bell

Nikoma, who has MS, and his wife Simone blog about how they’re reclaiming their MS narrative.

When people hear about multiple sclerosis, they often think about the physical symptoms like fatigue or difficulty walking. But living with MS is about much more than that. For us, being Black has had an impact on our experience of MS.

Our journey with MS has been exactly that - a journey - filled with highs and lows. And lessons in resilience, faith, and advocacy. When Nikoma was first diagnosed with MS, it felt like our world was flipped upside down. MS is an unpredictable condition that can affect anyone, but we didn’t expect it to affect us, especially not so early. We were only two years into our marriage and expecting our first child!

We couldn’t see people who looked like us

Needless to say, the diagnosis hit us hard. Not just because of the condition itself, but because of the unknowns. We were entering a world that seemed isolated, without much representation of people who looked like us.

One of the hardest things about living with MS from a Black perspective is the lack of visibility and understanding.

There’s a common misconception that MS only affects White people. That misconception can make it difficult for Black people to get an early diagnosis or the right support.

When we first started telling people about Nikoma’s diagnosis, some responses were filled with confusion or disbelief. And when people don’t understand the condition, they can minimise your experience.

Also, when Nikoma was diagnosed and given MS literature to look through, there were very few Black people featured and even fewer men. Nikoma felt like he was the only black man with MS!

We need to raise awareness that MS affects Black communities

From a Black perspective, living with MS is a layered experience. There are cultural nuances that can make it difficult to talk about long-term illness openly. Some of that comes from stigma—fear of being seen as weak, fear of being misunderstood Some of it comes from a general lack of awareness about MS within Black families. 

But we want people to know that MS doesn’t discriminate. It affects people from all backgrounds, and it's crucial that we raise awareness about its impact on the Black community. Early diagnosis, proper treatment, and emotional support are essential. And for these things to happen, we need more education, more visibility, and more honest conversations. 

Finding our voice and telling our story

Despite the lows, there have also been highs. The most important one has been finding our voice and using it to raise awareness about MS in the Black community. We started our Instagram page, Marriage and MS and began sharing our story. It quickly became clear that we weren’t alone. Other Black families were navigating the same challenges, and they needed a space to feel seen and heard.

Then last month we wrote our book on marriage and MS. It’s about embracing life and love beyond the diagnosis. The book is our story and encouragement to couples and families living with MS, offering them not just practical advice but hope as we are proving that you can thrive beyond long-term illness.

We want to empower others to speak up

MS has taught us to be resilient, but it’s also taught us the importance of community and advocacy. We’re committed to breaking down the stigma surrounding long-term illness in the Black community. And we want to empower others to speak up and share their experiences.

We’re stronger when we lift each other up, and that’s what we hope to continue doing through our platform, book, and upcoming podcast.

The reality is, living with MS is hard and very challenging. But we’re not defined by this condition. Instead, we’re defined by how we face it — and for us that’s together, as a family. That, to us, is true empowerment.