James May – A Man’s Story of Understanding and Healing
Nearly three times more women have RA than men. This is an oft-repeated statistic, but it does not mean the disease has no impact on men. On the contrary, there are almost half a million men living with RA in the United States. And while there are some amazing men sharing their stories online, like RA Guy and our own Andrew Lumpe, it does seem to me that there are fewer resources and sources of support available for male patients.
For that reason I was excited to see a session entitled Men, Masculinity, and Rheumatoid Arthritis, at the recent annual meeting of the American College of Rheumatology. There I was honored to hear and learn from James May, who has been living with RA for over sixty years. With his permission, I wanted to share his story here.
James May was diagnosed with juvenile rheumatoid arthritis (which today would be called juvenile idiopathic arthritis) in 1955 at the age of 14. He went from being active and playing sports to being unable to walk, a feeling I am personally familiar with. But what struck me most about hearing his story was the challenges he faced as a male patient in a time before the development of advanced RA treatments – a time when men and boys were not encouraged to share their emotions.
May spent much of his high school years in hospitals or participating in various therapies. He recalled how doctors rarely spoke directly to him, instead evaluating him as an object of research, as if he wasn’t allowed to have opinions about his own body or treatment. Today he knows these doctors were not bad people – it was simply how they were trained to interact with patients at the time – but this lack of voice as a patient clearly had a profound impact on May’s young adulthood. He felt terrified, lonely, isolated, and angry – and today admits he considered suicide. While I know many of us living with RA today struggle with depression, hearing about these experiences made me appreciative that today’s standard of care is generally more inclusive of a patient’s emotional well-being.
In a time before advanced RA treatments, May underwent multiple attempts to control his condition – without access to a pediatric specialist. A large daily dose of aspirin led to an enormous duodenal ulcer that threatened his life. Anti-inflammatory medications produced four more stomach bleeds, one needing ten units of blood to end the episode. He was injected with gold for years. Casts were used to reduce joint swelling, which only lead to muscle atrophy, physical therapy, and additional casts in what May calls an endless cycle of futility. A knee synovectomy at the age of 16 resulted in two weeks in the hospital due to an infection. Since then, May has lost count of how many operations he has had, but estimates the number is around 15 or 16, including six total joint replacements. Hearing this medical history made me feel intensely grateful for the advanced medications available for treating my RA today.
School was always a physical and emotional struggle for May. Unfortunately classmates bullied him and time spent in the hospital resulted in poor grades. Despite his debilitating health condition, May’s teachers did not offer him much support. He had to run a mile to pass his gym class, despite the intense pain it caused him. His speech teacher showed no compassion for how difficult it was for him to stand up straight. And instead of encouraging him to pursue his dreams, his high school math teacher advised him to forget college and get a job at a gas station. Defying everyone’s expectations, May earned a BA and two MAs by channeling his anger and frustration into a fierce sense of determination.
It wasn’t until May was 27 years old, working on one of his graduate degrees, that he finally met another person living with RA. He had lived 13 years since his diagnosis without knowing or talking to another soul living with RA, so both men were overcome with joy to have someone to talk to. This part of the story reminded me how thankful I feel for communities like this one, where I always have access to connect to others who understand what I am going through and remind me that I am never alone.
As was the cultural norm for men in the 50s and 60s, May’s father was not very involved in his healthcare as a child or young adult. In fact, May remembers the day his father told him about his diagnosis as the only discussion about the topic for over 30 years. It wasn’t until May was in his forties that his father finally opened up and apologized for being unable to take away his son’s pain. From that point on, father and son talked almost daily. His father begin accompanying him to physical therapy and joint replacement surgeries, declaring that he should have been by his son’s side all those years. Ironically, May’s father was also diagnosed with RA in his late eighties, and May helped care for him until he passed away. May credits this improved relationship with his father in helping him begin his own process of healing.
Sixty years later, May still struggles with fatigue, pain, and depression at times, as well as several co-morbidities. Seven years ago he underwent open-heart surgery, in part due to the arthritis attacking his heart valves. He has been through a range of biologic therapies. But he keeps moving forward, no matter how slowly. His wife has been his caretaker and constant cheerleader for the past 40 years. Together they walk their dog, Petunia, who reminds them that every day is a good day.
Hearing May share his struggles with strength and emotion helped me realize that there is some truth behind the saying that now is the best time to have RA. Rheumatology has come a long way from what May calls “the dark ages,” like the treatment he received as a child, to offering innovative, aggressive treatments that provide hope for a better future for people living with RA. May highlighted the importance of mentoring and support resources for newly diagnosed patients. He also stressed the need for a family-centered approach to treating RA, as we all know the disease impacts more than just the person who was actually diagnosed. Overall, May’s message was that learning to cope with RA is a constant and constantly changing process, and that becoming a self-advocate and building personal resiliency is crucial.
I want to thank Mr. May for sharing his story, so that the RA community can benefit from his experiences going forward. Please note that this work is copyrighted and permission must be obtained for re-publishing any or all of it by writing Mr. May at firstname.lastname@example.org.
This activity is not sanctioned by, nor a part of, the American College of Rheumatology.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?