• Scientists combined and summarised 77 scientific papers exploring the experiences of people with MS.
• Five common themes emerged.
• Developing closer partnerships between people with MS and their clinicians through a deeper understanding of the lived experience is vital in improving personalised, holistic management of the disease.

There have been many studies that look at specific aspects of the MS experience, whether it be MS and employment, MS and pregnancy or how people react to having a new diagnosis of MS. However, very few studies have tried to sum up the whole lived experience – until now.

A team of researchers from the Australian National University led by Dr Jane Desborough (whose other MS Research Australia funded project can be viewed here) have reviewed and summarised 77 scientific papers that examine the lives of people with MS.  These studies included people aged between 18 – 81 years old, two thirds of whom were women. People who participated were from all around the world including the UK (23%), US (17%), Scandinavian countries (12%) and Iran (12%).  The most common way these studies collected data was via interviews (84%), followed by focus groups (14%).

The research, which was recently published in the scientific journal Health Expectations, used a technique known as ‘qualitative synthesis’ and identified five overarching themes describing people’s experiences of living with MS:

• the quest for knowledge, expertise and understanding
• uncertain trajectories
• loss of valued roles and activities, and the threat of a changing identity
• managing fatigue and its impacts on life and relationships
• adapting to life with MS

Here is a brief snapshot of these themes and findings.

The quest for knowledge, expertise and understanding

People with MS reported that they often received generic information rather than tailored information, or don’t receive enough clear information. They also reported that often they have to navigate both their own and society’s preconceived ideas about MS and what their future life with MS might look like.

Conversely, while information was welcomed by most, some described being bombarded or inundated and overwhelmed by advice and details about the disease. In response, some chose to manage anxiety about the future by only researching those symptoms that were of current concern to them. This highlights the need for clearer communication around MS for people with MS.

Uncertain trajectories

Another common theme was the uncertainty of MS, including uncertainty around disease progression and around how they are going to respond to treatment. This uncertainty and unpredictability induces worry and impacts greatly on the quality of life of those with MS.

Loss of valued roles and activities, and the threat of a changing identity

The fear of the future impact of MS on valued roles and activities was frequently reported. This reflected the way that MS posed challenges to how people perceive themselves and their identity, and difficulties in adapting to a changing body and altered capabilities. Guilt and shame associated with changing roles and abilities that affected family dynamics were expressed. While this won’t be applicable to everyone with MS, this was a recurring theme.

Managing fatigue and its impacts on life and relationships

People with MS described feelings of frustration about the limitations that fatigue imposed on their lives and the resulting loss of spontaneity. Knowing how to manage this was a source of confusion, with some people highlighting exercise and diet as effective, and others attributing fatigue and relapse to incorrect forms of, or too much, exercise. Information and support to manage fatigue were found to be lacking for some, despite the significant impact it had on their lives.

Adapting to life with MS

Strategies that people with MS used to adapt to MS ranged from, and oscillated between, denying the existence of their condition to total acceptance. Although denial of the diagnosis was experienced by some people, mostly people with MS expressed defiance of their MS in the sense of not letting MS and its impacts define their identity, personal outlook, and everyday life.

What do these findings mean?

These themes likely resonate with most people’s lived experience of having MS, but they also highlight the importance of the partnership between people with MS and their clinical team. People with MS need access to information that can be processed and is clear – the ‘knowable form’ of knowledge – to assist with the underlying uncertainty. In particular, it is of critical importance to examine the long-term risks and benefits of treatments, including patient-reported outcomes, to enhance the capacities of people with MS and their clinical teams to make informed, person-focused decisions.