Here's a quick test.

I want you to imagine someone living with Multiple Sclerosis. What does their day look like? What can they do? What can't they do?

A new national survey found most Australians picture the same thing, which is a pretty limiting image.

The modern reality of Multiple Sclerosis (MS) – specifically Relapsing-Remitting MS (RRMS) – can look very different from the story we have in our heads. So, where does that gap come from?

Today, we’ll explore why so many of us have the wrong image of RRMS, and how we can update it.

^{This newsletter is proudly supported by Novartis, with expert input from MS Australia. As always, TDA has independently written and produced all editorial content for this newsletter without commercial influence.}

According to MS Australia, nearly 38,000 Australians are currently living with MS, a chronic neurological condition. Most commonly diagnosed between the ages of 20-40, 75% of Australians living with MS are women.

Relapsing-Remitting MS, or RRMS is the most common type of MS, accounting for 85% of diagnoses.

A new national survey explored Australians’ understanding of MS, and how these beliefs impact people living with RRMS.

Only a third of respondents had heard of MS. Over 75% of those who were aware of the condition said they either don’t believe or don’t fully agree that people with MS can have an active and happy life, even with treatment.

However, when researchers asked people living with RRMS to describe their lives, nine in ten said they feel positive about their future, and said that with the right treatment and support, they can live/are living actively and fully.

The sharp contrast between these findings has real world consequences for people living with RRMS, with misperceptions showing up at work, in relationships, and in the everyday moments where someone just wants to be seen for who they are.

Three in four people with RRMS have had their ability to do their job questioned by colleagues or managers after disclosing their diagnosis. One in two have been told they shouldn't have children. Not by strangers, by people close to them.

The cost of public misperception isn’t just social. It can shape how people live with MS and the choices they make about their health, with real consequences.

Sydney-based neurologist Dr Lysandra Katelaris said it's important to challenge harmful myths about MS.

“For many, living well with RRMS is not only possible, but also increasingly becoming the expectation. The more we challenge outdated beliefs and support early intervention, the more Australians with RRMS can thrive, and feel confident about their future,” Dr Katelaris said.

Having the right support and access to modern treatments can change what life with RRMS looks like today, but the research shows public perception has not kept pace.

Many living with MS still face significant health challenges, but when we look at RRMS specifically, “the opportunity to strengthen understanding becomes even clearer,” MS Australia CEO Rohan Greenland said.

“Thanks to modern, high-efficacy treatments, the progression of the disease can be slowed. This means that most people with RRMS can lead full, long and active lives: working, travelling, raising families, and contributing to their communities,” Greenland added.

Meg Maskell is a jeweller based in Sydney. She was diagnosed with MS in early 2020.

In the weeks after her diagnosis, Meg expected rapid physical decline, and described a sense of real and immediate fear. But the longer-lasting challenge, she told TDA, has been something else entirely: other's assumptions.

"The hardest assumption people have about me is that I am not capable of continuing my life as I know it," she said. "Being a business owner, being in charge of a team — people think I'm taking too much on, or that I can't handle it," Meg explained.

She's still running her business. She's still leading her team.

Watch: Meg shares what life with MS actually looks like here.

Most of us have held incorrect assumptions about MS at some point. But there’s an easy fix, one that doesn't require a policy change or a medical degree.

According to findings from national research, nine in ten people living with RRMS want to see more positive stories about life with RRMS shared publicly.  “Stories of resilience, success, and hope that show their diagnosis doesn’t define who they are or limit what they can achieve whether that be at home, work or in our communities,” MS Australia said.

For the rest of us, change comes from asking questions, un-learning our outdated perceptions, and recognising that with the right support and access to modern treatments, life with RRMS may not be what you think.

It’s important to acknowledge that MS does not look the same for everyone.

For some people, MS includes disease progression or disability that impacts everyday life in ways that are not always visible, with one in three Australians living with MS relying on support services to maintain their quality of life.

These experiences are an important part of the MS story. MS Australia remains committed to supporting and advocating for people living with MS in all its forms.