MS in the Black Community: Breaking the silence
This Black History Month, we caught up with Ken. He’s a proud volunteer with our EEDI (equity, equality, diversity and inclusion) reference group, and an EDI Consultant.
Here, Ken explores the barriers Black people can face when it comes to MS. He also reflects on why open conversations, representation, and care that respects cultural backgrounds are key to breaking the silence.
Black History Month is a time to celebrate resilience, heritage, and the ongoing journey towards equality. It’s also an opportunity to shine a light on issues that are too often overlooked in our communities. One of these is MS.
As an EDI Consultant, and a volunteer with the MS Society, I’ve had the privilege of engaging with people across diverse backgrounds living with MS. What has become clear is that while MS affects everyone differently, the experience of living with it as a Black person brings additional and unique challenges.
Understanding MS and the Black experience
For many years, MS was wrongly thought of as a condition that predominantly affects white people. This misconception has had lasting consequences, including delayed diagnosis and limited research into how MS presents and progresses in Black and other ethnic minority communities.
Research into MS and ethnicity is still developing. Some studies in the US have found that Black people not only develop MS but may experience more aggressive symptoms, including faster progression and greater disability earlier in the condition. But research in the UK hasn’t shown the same results, which could be due to cultural or healthcare differences between countries. What’s clear is that we need more research that includes diverse communities, so everyone with MS can get the right support and care.
And many in our community remain unaware that MS can affect us at all - leaving individuals to struggle in silence or have their symptoms dismissed.
The weight of stigma and silence
Talking about illness can be difficult in any community, but within Black families and cultural spaces, there can be additional stigma and mistrust of healthcare systems.
Historic inequalities and lived experiences of racism in medicine have understandably created barriers to seeking help or trusting a diagnosis.
Mental health stigma also plays a role. MS is an invisible condition for many, and the fatigue, pain, and emotional strain it causes are often misunderstood. Too often, people are told to “push through” or “pray it away,” rather than being supported to access the care and compassion they deserve.
Barriers to care
The barriers facing Black people with MS are complex and multifaceted:
Late or missed diagnosis due to bias, misinterpretation of symptoms, or lack of awareness among healthcare professionals.
Underrepresentation in research, meaning treatment approaches may not reflect diverse biological or social experiences.
Limited access to culturally competent care, where patients feel truly seen, heard, and understood.
Socioeconomic inequalities, which can affect access to specialist services, mobility aids, or ongoing therapy.
These barriers don’t just impact individuals - they affect families, carers, and entire communities.
Breaking barriers through representation and education
Representation matters - when people see others who look like them sharing their MS journey, it challenges stigma and builds connection. That’s why the work the MS Society is doing to engage Black and minority communities is so vital - from raising awareness and funding research, to providing accessible support networks.
As a volunteer at the MS Society and an ally of people living with MS, I’ve seen first-hand how powerful it is when people are empowered to tell their stories. By having open, honest conversations, we can start to dismantle the silence surrounding MS in our community.
Change begins with visibility
This Black History Month, as the theme suggests for 2025 - Standing Firm in Pride and Power, I encourage us all to:
- educate ourselves and others about MS and its impact in the Black community
- challenge stigma within our families and in wider society
- advocate for equitable healthcare and inclusive research
- listen to and uplift the voices of those living with MS
MS does not discriminate, but too often, the system does.
Change begins when we bring visibility to these realities and commit to creating an environment where every person, regardless of race receives the understanding, care, and respect they deserve.
If you'd like to learn more about diversity in MS research, register to join our upcoming spotlight on MS and ethnicity webinar on Thursday 23 October.
