OPINION

The challenges of maintaining good mental health while facing a long-term, worsening condition

12 May 2025
by Jo Anderson

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This Mental Health Awareness Week (Monday 12 to Sunday 18 May), Jo Anderson discusses the link between multiple sclerosis and mental wellbeing, and the importance of developing a holistic approach

Around half of all people diagnosed with multiple sclerosis (MS) will experience depression at some point in their lives. And people living with MS are more likely to experience poor mental health than the general population.

Meanwhile, a recent survey by the Neurological Alliance of Scotland, which the MS Society is a member of, revealed that 80% of adults and 95% of children and young people said their neurological condition negatively impacts their mental health.

Historically, charities set up to support people living with a particular health condition or disability would have predominantly focused on tackling symptoms and issues directly related to that diagnosis. Today, we’re far more aware of the need to support the ‘whole person’, using a holistic approach that includes mental health support.

MS is a condition that affects nerves in the brain and spinal cord. It impacts how people move, think and feel. Symptoms are different for everyone but can include difficulties with balance and walking, stiffness or spasms, and vision problems. Many common MS symptoms are invisible, such as fatigue, pain and problems with memory and thinking.

Some studies have suggested a link between depression and MS-related nerve damage in certain parts of the brain. But dealing with an MS diagnosis, and adapting to the changes and uncertainty it brings, can also cause some of the negative emotions associated with poor mental health, such as guilt, fear, anger and low mood.

Anxiety affects about a third of people with MS. MS symptoms can fluctuate from day to day, or sometimes even from hour to hour. And it isn’t currently possible to predict how a person’s MS will progress over time, although researchers are working on this. This uncertainty and unpredictability is one of the reasons so many people living with the condition develop anxiety.

MS can impact many areas of life, such as a person’s ability to work, maintain relationships and friendships, look after children, and keep on top of tasks such as housework. Struggling in these areas can cause significant stress, which can exacerbate some MS symptoms, including fatigue and mobility.

MS and mental health often impact each other bidirectionally. This means that while MS can impact a person’s mental health, mental health difficulties can also impact a person’s MS. For example, someone might experience a flare-up of MS symptoms during a period of stress or anxiety.

In 2023, the MS Society and five other MS organisations (MS Trust, Overcoming MS, MS-UK, Shift.MS and Neuro Therapy Network) produced a joint policy position on mental health and MS, informed by interviews with people living with MS, and their loved ones. The paper made a number of recommendations for UK-wide improvements in mental health provision for people living with MS.

The following year, the Neurological Alliance of Scotland published its ‘Recommendations for better mental health support for people affected by neurological conditions’ report, building on the joint policy and other pieces of work. Its recommendations included improvements to services in Scotland and training for the neurological workforce on mental health.

But supporting our community’s mental wellbeing is about more than writing reports and policies. It’s about sharing information and advice on mental health with members of our community. It’s about normalising talking about mental health and supporting people living with MS to share their stories and experiences of tackling mental health problems. It’s about providing programmes that support people to better mental health.

More than 17,000 people in Scotland, and more than 150,000 people in the UK, live with MS. That means tens of thousands of people in the MS community are likely experiencing mental health problems right now. And many more will do in the future.

Facing a long-term condition that will get progressively worse is a challenging context for maintaining good mental health. That’s why we’re speaking out during Mental Health Awareness Week.

Much like in my time at SAMH, where I worked for 13 years, the power of community support at the MS Society is making a difference – providing physical activities, counselling, living well sessions, peer support and much more. We want everyone living with MS, and their loved ones, to know that the MS Society is here for them.