Adjusting my definition of what it means to be a man

Kevin Schaefer, the associate director of community content at Bionews, the parent company of this website, recently shared a thought-provoking article from Psychology Today titled “How Chronic Illness and Masculinity Intersect.” It has me thinking about what kind of man I am and want to be.

The article notes that “changes caused by chronic illness are devastating in and of themselves. However, for men, there can be an additional layer of pain in that these changes implicate what they see as their male identity.” I don’t necessarily like the term chronic illness as it relates to diseases like facioscapulohumeral muscular dystrophy (FSHD). From my perspective, I have a disease but am not “ill.” That being said, the article raises some excellent points that, with the possible exception of our recent Olympic champions, most men should consider.

The article points out four key areas of intersectionality between masculinity and chronic illness. First is the area of physicality. Men are supposed to be the strong ones, doing the heavy lifting and hard work. That affects me every day. My FSHD has stolen most of my strength. I feel ashamed that my wife, Wendy, and my daughter, Jill, have to do all the physical work around our home. It hurts when Wendy is out mowing the grass. It bothers me when all I can do to get the groceries up the stairs to our kitchen is stay out of the way.

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The second area of intersectionality is sexuality. Most men don’t like to talk about this. All I’ll say is that FSHD has affected me profoundly. I’m not the man I used to be. I don’t think Wendy cares about this nearly as much as I do, although it bothers me slightly less than it used to when I was younger.

The third area of intersectionality between masculinity and chronic illness is sociocultural roles. I think this area is the one that causes most men to doubt their masculinity. Watching the men in our lives as we grew up helped most of us define manhood. I was raised in an era when most women stayed at home and took care of the house and the kids, while Dad went to work and brought home the paycheck. My dad, who was a factory pipe fitter, was a prime example of this type of manhood.

At one point in my life, I was a full-time teacher, played in a band three nights a week, and painted houses in the summer. I’m not the breadwinner I used to be, and I have to fight the feeling that I’m letting my family down.

According to the article, the final area of intersectionality between chronic illness and masculinity is emotionality. Life with FSHD is tough. Everything I do, except sitting absolutely still in a comfortable chair, causes me pain. And it seems to get worse every day. Social bias tells me that “real men” just grit their teeth and keep going. “Real men” don’t share their feelings or, God forbid, actually shed tears as they grieve a loss. I probably express my feelings more than most men. At times, that leaves me with a feeling of shame.

Flipping the script

The article encourages men who are dealing with chronic illness to “renegotiate” their definition of masculinity. I’ll give it my best shot.

I’m not physically strong, but I’m emotionally and spiritually strong. Despite my weakness and pain, I do everything I can to be there for my family, friends, and community.

I love my wife with all the strength I have and try to show it as much as possible. She loves a good foot rub, so I’m always available to do that for her.

Financially, I contribute what I can. I feel blessed that we’re paying our bills and have a few bucks in the bank for a rainy day. Sadly, that’s not the way it is for many families.

I’m getting a little emotional now, but I celebrate that I have the opportunity to share what I’m experiencing as I live my life with FSHD in this column and in support groups. I’m not only strong enough to share my feelings with others, I’m also strong enough to listen to their stories and help them bear their burdens as best I can.

At times, I’m sure I let other people down, but I’m trying to be the best person I can be. That should be enough for all of us, regardless of gender.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.