Dispelling the Misconception: "Men Don’t Have Lupus"
Last updated: April 2023
In 1990, my mother and I attended our first lupus symposium. A rheumatologist gave a shocking presentation. The Lupus Foundation of America (LFA), Georgia Chapter (the Chapter) should have posted a note in the program, "The views of our speakers do not necessarily represent the views of the organization," because the rheumatologist said something shocking. "Men don't have lupus," he said. I am sure our mouths dropped to the floor.
My shock didn't end there. I attended a 2-day think tank with some of the country's most revered rheumatologists, epidemiologists, pharmacologists, sociologists, and every other "ologist" one can think of in 2019. My friend and former Lupus.net advocate, Martin Lewis, and I were the only 2 men out of the 26 patients to receive an invite. By the end of the event, Martin and I had to get up and speak on behalf of men because several of the ologists kept using female pronouns.
Dangerous assumptions about lupus
Honestly, I am not surprised by these statements. The LFA's National Lupus Research Center on Lupus (Research Center) estimates that between 4 percent and 22 percent of patients are men. According to the Research Center, there remains an assumption that men don't get lupus. This assumption is dangerous because it can impede referrals to a specialist and a diagnosis.
It took 8 years for me to develop severe enough conditions for my internist to hospitalize me finally. I was in intensive care at the age of 16. Doctors ran tests for lots of conditions over a 2-week period. The infectious disease doctor diagnosed me with lupus right before leaving the hospital. I know women can relate to this experience but consider how gender can impede a diagnosis.
Some research suggests that men with lupus experience a more severe form of the disease. Men with lupus develop nephritis and serositis at a higher rate. My paternal grandfather, who was never diagnosed with lupus, developed serositis when he died. Could he have had lupus? Three of my young male friends with lupus died in the last 2 years.
What can society do to support men with lupus?
I remember hosting a lupus table at a men's health fair on two separate occasions. Women were the only people to stop by my table. My grandfather had an aversion to doctors or hospitals; hospitals meant you would die. He was the sole earner in his house and a steelworker. He had to go to work to feed his 6 children. I know dozens of men with lupus who left their blue-collar jobs, leaving their wife as the sole earner in the house. According to Ian Banks's article, No Man's Land: Men, Illness, and the NHS, "U.S. research shows that men with health problems are more likely than women to have had no recent contact with a doctor regardless of income or ethnicity."1 Banks also wrote that this reluctance leads to more severe health conditions.
Society needs to change. Men need to be educated about their health. Employers need to mandate risk assessments and hold health fairs. Doctors need to post pamphlets geared towards men, and insurance companies need more incentive programs. Banks states that society needs to have more male nurses, and doctors need to spend more time with male patients because males see doctors at fewer rates.
The good news is that the rate of men being diagnosed is increasing. Hopefully, that means that men are seeking treatment at increased numbers. Hopefully, that will lead to less severe cases of lupus in men. Hopefully, that will lead to research directed at men. I've always that the cure for lupus might be under our nose.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?