Aug 2 • General discussion
You can’t fix what you don’t always see
Multiple sclerosis (MS) continues to be seen—and spoken about—as a disease that affects only white people, particularly by many in Europe. In America, it’s often labelled as a “white women’s disease”, and outside of English-speaking communities, there isn’t even a widely recognised term for it. This limited perspective makes living with MS in the UK especially isolating for people of colour. Every time MS is discussed publicly, it’s almost always a white person sharing their experience.
It may seem like a minor issue to some, but in reality, there are countless Black people suffering from MS without answers as to why this disease often affects them so aggressively. The rate of disability among Black people with MS is much higher compared to their white counterparts, yet the reasons remain largely unexplored. There is a distinct lack of urgency when it comes to understanding MS in Black communities. As a result, people continue to suffer in silence while the narrative remains unchanged.
We keep hearing that “MS affects everyone,” but in practice, the stories that are shared in the media rarely reflect this diversity. The only times you might see a Black person talking about MS are when they are athletes or celebrities—and even then, discussions rarely address health disparities or the unique challenges faced by Black and minority ethnic communities.
The power and influence of television and media are constantly underestimated. When only one type of story is told—when only white faces are associated with MS in news reports, documentaries, and awareness campaigns—it shapes public perception and even impacts research priorities. It reinforces the misconception that MS is only a “white person’s disease,” which means that the unique experiences and challenges faced by Black people are consistently overlooked.
I have been turned down by the media countless times when I have tried to speak on this topic. When they research MS, all they see are white faces, and so my voice is overlooked. But I refuse to be silenced or discouraged. My lived experience matters, and I am determined to challenge the current narrative around MS.
This invisibility must end. It is time for the media and the wider public to recognise and address these disparities. We need more representation, more research, and more open discussion about how MS impacts Black communities—and we need it now. It’s time we expanded the conversation, made space for diverse voices, and recognised that MS does not discriminate—so neither should our understanding or our support systems.
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You can’t fix what you don’t always see
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