Living with Multiple Sclerosis (MS) is different for everyone. Anybody can have MS, but not everyone has the same access to healthcare, support or information. Research shows that more Black British and South Asian people are being diagnosed with MS, but we know very little about how people experience life with the condition, and even less about what it means to live well with MS across age, gender, background or belief. This project set out to change that.

We are the six peer researchers – people living with MS who brought our own lived experience. We’re from Leeds and London, and together we led this project. As Francine put it, “we’re not just the mum, not the grandma, not the MS person, we are people who know things, who have our own voices.”

We are the researchers. We have carried out this research in our own voices.

We, the peer researchers, spoke to 35 Black British and South Asian people with MS from London, Leeds, and Bradford. Some conversations were one-to-one, others took place in small groups. We asked people about their experiences of living with MS, what helped them, what got in the way, and what needed to change.

We listened carefully. We read and reflected on every story. Together, as a team, we looked for shared themes and patterns. We found common challenges that made it harder for people to get the care, information, and support they needed.

At times these conversations were, as Saf describes, “heated and tough to listen to.” But they were also honest and generous. As Karen said, “you realise it’s not black and white – there are so many other things at play, and we need to listen to all of them.”

People’s experiences of MS were as varied as their lives. As Waseem put it, “MS isn’t linear, is it? It’s loads of stuff.”

Misconceptions about MS were common, both in public understanding and among families and professionals. People told us they were sometimes dismissed, and how language barriers added to confusion and delays around diagnosis. Age and where someone lived could shape what care they were offered, or whether they received any at all. There were also cultural expectations that shaped how people felt about telling others, asking for help, or making sense of the condition. Others spoke about how education or gender impacted the kind of treatment or information they had access to.

Getting to the “right” healthcare professional, someone who truly understood MS and prioritised their needs, often made a big difference. But for many, this wasn’t easy. Some struggled to get the information they needed, especially early on. There were also emotional challenges: people described feeling ashamed, in denial, or overwhelmed after diagnosis. Some turned to faith or personal beliefs to help them cope. As Lauren said, “just listening to people’s experiences, it resonated, so many common themes.”

Formal support often felt out of reach, and people looked else- where, building their own support systems when services fell short. Despite these challenges, many found ways to navigate their MS journey with strength, resilience and self-advocacy.

We are listening. You are not alone.

This research has been about making space for voices that are rarely heard in MS services or research. It’s not just about who gets included in data, but who gets to lead the conversation. As Rawda said, “It was an exchange, we were helping each other realise things. MS doesn’t have to limit us. We still get to do things. We still get to speak.”

By sharing these experiences, we’re building a clearer understanding of where support and care systems are falling short, and now we can think about how they can be improved.