Redefining ‘manliness’ when living with chronic pain

By Emil DeAndreis

Recently, social media recommended to me a video of a guy changing horseshoes. This struck me as random, but I could see the churning algorithms that had led to it. I’m a mid-30s dude, and previously have liked posts about the outdoors and animals. Artificial intelligence deemed this video for men like me, so there I was watching a rugged guy clamp industrial-strength pliers to a horse’s hoof and wriggle with both hands, bending the metal, dislodging it bit by bit. I had to laugh. I couldn’t be more unlike that man. If I’m being honest, it probably would’ve hurt me just to put on the gloves.

Shifting views on manliness

In 2008, I was 23 and about to start a pro baseball career. The same month a European team signed me, my body swelled and I was diagnosed with rheumatoid arthritis (RA). I was in denial as long as I could stand it, which was basically until I couldn’t stand. One week I was doing power cleans and drinking protein shakes, and the next it hurt to tear a paper towel. How was I still a man then? Thankfully, time, writing, traveling, and my adventurous wife all helped, and I have more or less settled into this new me.

Recently I became a dad. My son Ennio was born on April 20, 2021, and each day has been precious and surreal, watching him grow from a scruffy yam to a stretching, reaching soul. But I can’t help but envision the years to come. I wonder—on lake trips where other dads catapult their kids through the air, or at barbecues where dads rip 30-yard football passes and then wrestle down their sons, what will my son think? Will he envy other families and other fathers?

Someone else who’s been through it

Rick Phillips has been living with chronic illness for longer than I’ve been alive. He was diagnosed with type 1 diabetes when he was 17, back in 1974, then rheumatoid arthritis at 43. Now he is in his 60s, a family man, an adventurer, a storyteller. In reaching out to find other men with autoimmune conditions to talk about the issue of manliness and pain, I was connected to Rick.

“In 1974, people with diabetes were not expected to live much more than 30 years,” Rick says. “But for me, the early diagnosis drove me. It made me hyper to accomplish.”

The result: marriage at 19, kids at 23, and work as a city controller and then as a school finance director, overseeing 11 school budgets and 1,200 employees, by 33.

“I measured my worth by my work,” Rick says.

But in 2000, at the height of his career, Rick’s body started to crumble. One day his son wanted to take Rick for a spin in his new truck, but Rick’s back, ankles, and wrists wouldn’t allow him to hoist himself inside.

His son was hurt, and Rick didn’t know what to say. By 2008, he was incapacitated by RA, though he had yet to be diagnosed. He was forced to leave his job. But he got therapy, his wife stuck with him, and his kids were supportive. 

Finding fun

Today, Rick lives by a code of fun.

“I simply am not going to do it if I’m not having fun,” he says.

Fun is bike rides with friends that begin at midnight and go until dawn. It’s jumping out of a plane—in his 60s—for the first time in his life. Less extreme activities include walking with his wife of 44 years through local parks, then afterward getting coffee.

“I don’t walk very well these days, but usually in a week I’ll do 10 to 15 miles. I’m also in a competition with six women in a FitBit challenge. They always beat me,” he says, chuckling. “They take perverse pleasure in whipping me, and it’s fun.” 

Hearing this, I wondered: Hmm, getting taunted after losing walking competitions—that’s fun?

“I’ve got a really odd sense of humor,” Rick says. “I take pleasure in stories; I take pleasure in making fun of myself. It makes chronic pain so much more bearable.”

Which leads him to another code he lives by:

“I won’t see doctors who don’t laugh,” he shares. “If I go see a doctor and they don’t laugh, I won’t go back.”

Moving forward—with a new take on manliness

So where does this leave me, as a new dad looking down the road? There will be seemingly insurmountable challenges, physical and emotional. But there’s always a way through with the help of loved ones. I’ll remind myself, thanks to Rick, to measure my life based on its stories, not accomplishments.

And finally, and perhaps most importantly: humor. Never take yourself too seriously. Laugh at yourself. The incongruity of a man standing over a pickle jar, growling at its refusal to open as his son watches, or social media suggesting a manly video when really, unlocking your car is sometimes the manliest thing you can do—sure, it can be infuriating, embarrassing. Or, it can be pretty damn funny.    •

Gender and autoimmune disease

Only 20% of people with autoimmune disease are males. The ratios can vary widely by disease. For example, Sjogren’s syndrome affects women in a 9:1 ratio; systemic lupus erythematosus in a 7:1 ratio; and rheumatoid arthritis (RA) in a 3:1 ratio. RA typically develops in women between the ages of 30 and 60 and is rare in men under 45.

According to the CDC, women are more likely to have chronic pain (21.7%) and high-impact chronic pain (8.5%) compared with men (19% and 6.3%, respectively).

A growing body of research indicates men and women have different biological pathways for pain, which may lead to more targeted treatment. A 2017 analysis of 1,371 patients showed that at the same pain level, women report significantly higher activity level, pain acceptance, and social support, while men report higher fear of movement, mood disturbances, and lower activity level.

Researchers have reported that men with fibromyalgia may experience more affective distress than their female counterparts due to the stigma of having what is considered a women’s disease. One study based in Sweden reported that chronically ill men believed that health care staff did not take their symptoms seriously, and thus they often felt neglected by the health system.

Studies have found that characteristics society typically attributes to men such as stoicism, risky behavior, and pain tolerance affect men’s likelihood to seek care—and the level of care they receive if they do seek it out. In one British study, a participant said, “You have to be bed-ridden or half dead before you’ll go (to the doctor’s).”