Exploring the experiences of young men living with inflammatory arthritis

19 March 2021
Ruben outside enjoying nature on a walk.
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Ruben McNeil-Walsh is undertaking a research PhD at the University of the West of England, exploring the experiences of young men living inflammatory arthritis, with a focus on masculinity

The social impact of chronic conditions in young men is an under researched area, and with evidence suggesting that young men aren’t as equipped to look after their health, it’s crucial to understand why so that we can provide better healthcare options in the future.

Can you share the headlines of your research?

My research explores the experiences of young men, aged 16-24, who are living with inflammatory arthritis (IA).

I’m interested in understanding the ways in which a chronic disease affects men during this crucial stage of growing up, as well as investigating if there are certain approaches to self-management and coping strategies which young men adopt.

For this research project I’m using one-to-one interviews, which will give young men with IA a platform to contribute their views on the subject. Down the line, I am hoping to run some focus groups to see what young men feel would work best for their care.

I’m interested in investigating how chronic pain might influence the way young men develop as men, as well as how learning to be a man might influence the management of chronic pain.

We do not really know enough about how masculinity and chronic pain/ disease relate to each other!

It’s easy to make assumptions about how chronic pain might be affecting how a young man negotiates the complexities of their late teens and early adulthood, but until we speak with men who have experienced it for themselves, we cannot be sure.

How would describe chronic pain and how can the impact be different for young people?

Giving a brief description of chronic pain is tricky!

It’s a very complex subject and can be approached from many different angles. Personally, I see chronic pain as a physical and emotional challenge for patients, which requires ongoing and consistent medical management as well as buckets of resilience.

There are similarities in the ways in which chronic pain affects people of all ages, but there are certainly challenges unique to younger people.

For example, many of the ways in which young people socialise and develop requires a level of physical mobility and so might not be possible for a young person with chronic pain.

Another example is education; kids with chronic pain may not be able to attend school at times when their symptoms are bad, and this may have a knock-on effect for both their educational attainment and their overall development.

Why do you think it’s important to do research with young people, specifically young men?

Chronic diseases like IA have no cure, so there is always going to be a need for some level of management.

This means that young people diagnosed with a chronic condition can expect to spend most of their lives in and around health services.

This can be a daunting prospect and so it is essential that we understand the experiences, concerns and preferences of young people with these diseases as best as is possible, so that they can enjoy the best quality of life possible.

We know from research with adults with arthritis that for some parts of care, men and women have different preferences. It is not really known if this is the same for young people.

Hopefully, by speaking with young men with IA about their experiences we can get a feel for what healthcare approaches might work best.

Unfortunately, evidence would suggest that young men are not always great at taking care of their health. The aim is to get an understanding of how being a young man with a chronic disease might be influencing decisions regarding healthcare, and from that assess what support could be put in place to meet the needs of this group.

What do you hope will be different in the future for young people living with chronic pain?

Versus Arthritis, and others, are doing fantastic work in raising awareness that inflammatory arthritis affects young people too.

I really hope that more public acknowledgment of this will help young people with the disease to navigate their late teens and early adulthood just that bit easier.

Second, I hope that the continued progress in the effectiveness of treatments continues, particularly regarding achieving a steady state of remission.

This would allow young people living with chronic pain to look ahead with just a little more confidence, knowing that their symptoms will be stable rather than fluctuating. This in turn would allow them to make plans and enjoy an improved quality of life.

Find out more about Ruben’s research.

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Read advice and information for young people who have arthritis and their families, including how to ease your symptoms and tell friends about your condition.

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