“Men, Masculinity, and RA” at the American College of Rheumatology Annual Meeting

When you read about rheumatoid arthritis, an oft-repeated statistic is that there are three times more women than men with RA. Nevertheless, there are still almost half a million men living with RA in the United States alone. For that reason I was excited to attend a session entitled Men, Masculinity, and Rheumatoid Arthritis at the recent annual meeting of the American College of Rheumatology. At that session I was honored to hear and learn from James May, who has been living with RA for over sixty years.

At the same session, Dr. Caroline Flurey, a Research Fellow at Arthritis Research UK, presented the findings of some studies that explored the experiences and coping styles of men living with RA. Dr. Flurey asserted that there are gender differences when it comes to the impact of a chronic illness as well as coping styles. These differences are influenced by many challenges that are specific to male patients, including the idea that illness may threaten masculinity or a man’s social capital. Men are often expected by society to be self-reliant, stoic, or portray to the world that everything is fine. Consequently when men struggle, they may be more likely to express their struggle as anger, aggression, or self-destructive behavior. This is demonstrated by the suicide paradox – although women are three times more likely to suffer from depression than men, men are four times more likely to commit fatal suicide than women.

The studies Dr. Flurey presented aimed to investigate how men experience and cope with their RA, as well as exploring the type of support that might be acceptable to men living with RA. The studies consisted of focus groups, which were co-facilitated by patient research partners, one-on-one interviews, and a set of statements that were sorted into a grid by participants based on how much they identified with the statement.

While the studies presented a range of experiences and coping styles among male patients, there were some themes found throughout. Many of the men were frustrated with their loss of strength and ability, particularly when it came to physical activities they were no longer able to do. Dr. Flurey shared a few quotes from the study participants with the audience. Alan, age 64, shared “It is horrible, you’ve got to say to your wife ‘I can’t undo this bottle,’ and she just goes like that and it’s undone.” James, age 72, said, “It sounds funny, but it’s so soul destroying because what it does, it takes away your self...you’re sort of dependent.”

There was also a sense of loss of their masculine identities and roles, such as their role within the family as the father or the breadwinner. For Steve, age 44, the hardest part of having RA is “when my boy turns around and says to me, ‘Why can’t you come and play football with me dad?’ that really, really hurts.” Richard, age 69, added “I suppose you always feel that as a man you should be the main person doing the lawns, the gardens, round the house.” Study participants were also frustrated with their loss of power and control, including a loss of physical and financial independence, as many were forced to stop or reduce working and rely others to help them.

When it came to ways of coping, the men in the studies agreed they often adopted a “just get on with it” sort of attitude, trying to carry on being as active as possible. Most kept their RA hidden by putting on a brave face and only accepting help if it was extremely discreet. Many of the participants withdrew socially or took part in destructive behaviors. Overall, most of the men felt they lacked anyone that they could really talk to about their experiences.

The studies concluded that there is a realistic possibility that many men are not served adequately by current RA self-management interventions. In drawing some conclusions about potentially acceptable support, most of the participants agreed they weren’t really interested in attending support or discussion groups, but would be more interested in access to better information. They also felt it was important for healthcare professionals to ask direct questions about emotional and psychological issues, so that they would have “permission” to open up about them. Dr. Flurey emphasized that rather than perpetuating the “strong and silent” myth, family and health care professionals alike should reach out to men to offer them adequate understanding and support.

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