The invisible and often unsupported symptoms of MS

It’s World Multiple Sclerosis Day on Saturday May 30, a chance to talk about the symptoms of the condition that often remain invisible to the outside world.

Multiple sclerosis is a chronic neurological condition in which the immune system mistakenly attacks the brain and spinal cord, damaging the protective myelin layer around nerve fibres and disrupting communication within the central nervous system. It’s one of the most common neurological diseases affecting young adults, with most people diagnosed between 20 and 40, just as people are building careers, families, and futures.

The first signs of MS are often physical and can include vision problems, numbness or burning sensations in the hands and feet, balance difficulties, weakness, or trouble walking. These symptoms are usually what bring people into contact with the healthcare system. From there, the neurologist’s focus, quite rightly, is often to suppress inflammatory activity in the brain as effectively and as early as possible. Current disease modifying treatments have become increasingly successful at doing this. The underlying principle is simple: ‘time is brain’. The earlier inflammatory activity can be controlled, the better the long-term outlook.

But alongside these visible symptoms, there is a quieter set of effects that are less visible and often less responsive to treatment. About half of all people living with MS experience cognitive difficulties, including problems with memory, attention, information processing speed, or concentration at some point. Fatigue, anxiety, and mood disorders are also common.

These symptoms can have an enormous impact on people’s lives but receive far less attention within clinical care. Neurologists are usually focused on controlling inflammatory disease activity, monitoring scans, and preventing long-term physical disability. In overstretched clinics and healthcare systems, there is rarely enough time to fully explore cognitive or psychological symptoms, particularly when these problems are harder to recognise.

In my research I have focused on these less visible symptoms since 2009. In many ways, that interest was inspired by my own mother, who lived with MS and experienced significant memory difficulties and “slowness”. I often felt powerless in understanding how best to support her. When someone struggles to walk, you know how to help. But cognitive problems were far less obvious, and the impact of them unfolds quietly within everyday family life. 

At times, her symptoms also created misunderstandings within our family. My brothers did not always interpret the changes they saw in our mother in the same way I did, which occasionally led to frustration and tension for her on top of the cognitive difficulties themselves. It made me realise how invisible symptoms can remain misunderstood, and how important recognition and support really are.

This month, I travelled to Wellington for the annual meeting of MS New Zealand, where I was invited to speak about this topic. In the room were neurologists, community workers, people living with MS, policymakers, and MPs. The theme of the meeting was ambitious: advancing equitable and excellent MS care.

The conversations that day extended far beyond clinic rooms or research laboratories. They were ultimately about how a society responds to chronic illness and invisible disability, and to the care available.

Neurologist Anna Ranta gave a confronting overview of the neurological workforce crisis in New Zealand. In some parts of the country, people with neurological conditions have little or no direct access to a neurologist at all. Much of their care is carried out by general physicians already working under enormous pressure.

New Zealand has roughly one neurologist per 80,000 people, substantially fewer than in many European countries. In the Netherlands, for example, there is approximately one neurologist per 14,000 people. Discussions about “optimal care” cannot be separated from the realities of workforce capacity and access.

I became very aware of the context. I was about to stand up and advocate for greater attention to the cognitive and psychological consequences of MS in a healthcare system that is already stretched incredibly thin.

And yet, that is precisely why this conversation matters.

We need to think collectively about what healthcare for people with MS should look like in the future. If we design care around only what is manageable today, we risk losing sight of what people may need over the many decades they live with the condition.

One of the most common cognitive changes in MS is slowed information processing speed. Because communication within the brain becomes less efficient, thinking, responding, multi-tasking, or keeping up with conversations can require far more time and energy than before.

These symptoms are often subtle and invisible to others, and sometimes even to the person experiencing them. Early on, people may assume these cognitive changes are simply the result of the stress that comes with living with a chronic neurological condition, or of parenting and work pressure. And during a short clinic appointment, there is rarely enough time to explore these concerns in depth. Physical symptoms or treatment decisions demand the most urgent attention.

Yet the consequences can be profound. About two thirds of people with MS leave paid employment within five years of diagnosis. That represents not only a loss of income, but often a loss of independence, identity, social connection, and purpose.

Crucially, support for cognitive difficulties appears to be most effective when relatively little neurological damage has occurred. That makes early recognition essential. Not because we have a pill that simply fixes these problems, but because timely support can make a real difference in helping people understand and manage their symptoms.

Sometimes, support begins with something simple: being able to talk openly about these symptoms, with an MS nurse, neurologist, partner, family member, or children.

Being understood can make an enormous difference. Recognition doesn’t remove the symptoms, but it can reduce misunderstanding, frustration, shame, and conflict. That kind of understanding would likely have helped my own family in understanding my mother’s cognitive difficulties.

There are also practical strategies that can help overcome cognitive symptoms, particularly when problems are recognised early. These can be simple: using calendars or shopping lists, reducing multi-tasking, building in recovery time, or openly communicating limitations to family, friends, or colleagues. Small adjustments can make everyday life easier.

Within research, we are also exploring the effects of cognitive training and lifestyle interventions on cognitive functioning and wellbeing. Later this year, this research will include participants in Auckland.

The right support at the right time can help prevent a cascade of downstream problems, not only for individuals themselves, but also for their continued participation in work, family life, and society more broadly. When people understand their symptoms and feel supported, they are better equipped to manage their condition and seek the right care.

People rarely die from MS but often live with it for many decades. That reality should push us to set the bar higher than disease control alone, and to help people live as fully as possible.