Why Men Speaking About MS Makes My Heart Happy

People speak in tongues the world over. What is familiar language to one group sounds like gibberish to another. Take body language, for example. People with multiple sclerosis can bust some pretty weird moves to get from one side of a room to the other. Non-MS folks observing this can feel pretty done in by the spectacle. They’re not sure where to look or what to do with their hands, as though they accidentally wandered onto a porn movie set during the money shot.

Within the multiple sclerosis community, the lurid movie set is an MS forum, where women dominate the discussions and men’s contributions are noticeably sparse and cryptic despite sharing the same disease experience. Two tribes, two languages. Until fairly recently, silence from the XY contingent has made it difficult to get the gist of a man’s MS experience. But not so much anymore. A happy trend of man talk is gaining momentum across all online forums these days.

Men speaking about MS

In a May vlog posted here on MultipleSclerosis.net, heavily-bearded, deep-voiced, manly Devin Garlit sits in a cubby lined with shelves, those behind him filled with miniature medieval-looking warriors on horseback, neatly lined up and ready to charge. He holds his adorable dachshund, Ferdinand, against his chest, occasionally looking down at his pet’s muzzle and acknowledging a yawn or a nudge as Ferd getting tired. He seamlessly continues talking about feeling anxious, having had thoughts of suicide at one point, and acknowledging May as Mental Health Awareness month in his, calm, deep, soothing baritone. This kind of scenario is still new to me and as new things tend to do, it fills me with hope and gratitude and yes, some tears. I’m sure it strikes lots of people that way—but maybe not for the same reason it gets deep in my gut.

See, I’m kind of old. Call me a young senior (but not to my face). I lived the first two-thirds of my life in a world where men did not talk about their feelings. At age 12, I was mesmerized by Tom Jones, as were apparently many grown women who went to his concerts and threw their panties at him. I wondered why women acted that way until I realized what was drawing me to Tom Jones. Here was a macho Welsh guy singing about feelings, a broken heart, killing me softly with his song, making me want to soothe his pain in that nurturing way I (and most other women) do. But I also thrilled at the revelation that he feels his life the same way I do. It allowed me to see we aren’t that much different. What a contrast to the men in my personal life. My father and brother were doers, problem-solvers, not father-confessors and certainly not subject to fits of tears. In 1969, there was no crying in man-world. Today, things are not much different with men of my generation.

Is there a generation gap?

Younger men don’t seem to live by the same rules. If we look again at the male contributors here at MultipleSclerosis.net, we see three men cranking out heartfelt narratives to a devoted readership made up of both men and women who post passionate testimonials as their way of throwing their panties (and tighty whities) at the likes of Matt Allen, Devin Garlit, and Marc Stecker. All these guys are under age 50. The ease with which they express their thoughts and feelings tells me they have done it before and often.

In my 2013 article titled MS and the Manly Man, I discuss the many reasons why men lack the language for feelings talk and have been reluctant to contribute to online discussion forums. For one, older men often lack the computer skills that younger men learned before they started kindergarten. Gaining access to the virtual world of language and imagery is a man’s best shot at connecting with other men now. Learning to use the camera/video feature on his smart phone can mean the difference between feeling left out and feeling the warmth of instant reaction to his uploaded video. Most people seem to have a built-in supportive gene that likes to encourage the underdogs—which would describe most of us on any given day. Social media makes it easy to tap into the vast cyber ocean of support and empathy.

In a time when MS cases are being diagnosed more easily and earlier than ever before, and the ratio of men to women with MS is widening—now approaching 1:4—it’s become more urgent than ever to avoid self-isolation, a natural impulse for everyone diagnosed with MS, but particularly devastating for men. Traditionally, men have relied on the women in their lives for comfort and understanding, and for the language to describe how they feel. But the younger ones who are more tech-savvy also seem to be more feelings-savvy, and perhaps there is a connection there.

Men reaching out to other men with support and shared experiences used to be something that happened only in AA meetings.  Shame hung heavy as the Iron Curtain during the Cold War. But with trailblazers such as millennials speaking the language of disease in the most personal ways, feelings talk is becoming more normalized among cismen, whose signature tune used to be The Sounds of Silence.

My thanks and appreciation go out to you, Matt, Devin and Marc. You inspire the whole MultipleSclerosis.net community, men and women alike.

Good-bye darkness, my old friend.

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