There is a special place in my heart for guys who are unlucky enough to develop Multiple Sclerosis. We’re all unlucky to have this disease, but as statistics will bear out, our brethren tend to get handed the booby prize for the most rapidly progressing disease courses more often than do our sisters.
Although women who develop MS outnumber men by at least 2:1, men will reach a 3 on the EDSS sooner than their female counterparts regardless of which form of the disease was diagnosed at onset. This means men will need a mobility aid such as a cane, crutches, or walker as many as ten years sooner than will women. And though hormones are thought to play a part in these scenarios, that piece of the puzzle remains poorly understood.
Where symptoms are concerned, MS shows no favoritism. Motor dysfunction, bladder and bowel incontinence, optic neuritis, numbness, tingling, and endless variations of neuropathic discomfort plague both genders. Spinal cord damage will cause walking problems, bladder spasticity and sexual dysfunction in both men and women. Yet if you do an internet search for articles about men with MS, you’ll find most of the info is focused on male impotence, with ads for Viagra crowding the margins of every health site. As though impotence is the worst thing that can befall a man with a chronic disease. And it’s no wonder. We teach our boys that being a man means he is both an exquisite athletic specimen and a virile sex machine.
We women with MS have got it tough in this world fretting over our compromised beauty and youth, fighting the good fight for equality and independence, career and motherhood and flexibility in the workplace. But one thing women get instant credit for—and our society’s permission to explore—is an innate talent for effortlessly slipping in and out of many different roles, and we do it pretty much without having our femininity called into question. We’re allowed to fail without too much censure because there’s still that faint medieval echo of women being thought of as the weaker sex. Sure, we beat ourselves up plenty about our perceived failures, but we can easily find a network of female supporters who keep us afloat and connected. And on average, women tend to want to seek out those support systems.
Men aren’t let off the hook quite so easily, however. Nor do they excuse themselves for their perceived shortcomings any less often than do women. But men have a unique dilemma. By the age of four, boys have already learned not to show sensitivity or vulnerability. School age boys face bullying and censure if they show sadness or fear, display thoughtful restraint, and can articulate ideas, compassion and emotion.
Physical prowess defines masculinity, and the school age years provide conventional outlets for such development with organized team sports. A boy’s role models are the leaders in those fields: Pro basketball high scorers, the best hitters in pro baseball, Olympic gold medalists. We all fawn over these larger-than-life accomplishments, we live vicariously through these Adonises. We want to see them better their performances with each passing year despite the fact that humans reach their physical peak around age 25 and then begin to decline. The business of athletics and advances in modern medicine strive to render this notion of decay quaint and irrelevant. If this weren’t true then doping wouldn’t be the problem it is today. Bigger, stronger, faster, harder. And not because coaches and mentors helped him to exceed his past triumphs. The doping athlete has a little help from his secret friends, the kind that come in the form of a syringe. This kind of athlete who is past his prime can maintain the illusion that he stands out and stands alone as a freak of nature, a creature that is impervious to the ravages of aging, of weakness and self-doubt, a Greek man-god whose mysterious gifts are lauded in modern myth-telling. That is, he can maintain the illusion until the lie is exposed. And when it is, his one coping tool is taken away and his only recourse is silence and withdrawal. He doesn’t have the words for what he is feeling and thinking. He never did.
When the average man is in his youth, he gleefully pushes his body to the max, testing his strength and endurance. We mothers, sisters, girlfriends and wives watch while our XY chromosome darlings drag race, jump out of planes, hang glide, and otherwise taunt death, driving us crazy with worry that they’ll snap their little spines or lie shattered atop rocks that broke their fall after diving off a high cliff in Oahu. Worrying is for sissies, a young man thinks, I am invincible. I am! Just watch me do this…and he does that, and most of the time, he’s okay. A broken bone there, a concussion here. It’s worth a little minor injury. The world is his oyster and so what if he gags on a few shells from time to time? He’s a guy, he’s doing that crazy shit because he can! We love him and feel proud of him for it, too, we’ve got photo albums full of Kodak moments to prove it.
But what happens when that man develops Multiple Sclerosis right smack in the middle of his daredevil phase? Let’s say this guy is the type that subscribes to the rigidly learned gender role of masculinity, the one society has assigned to him and one in which he has heavily invested himself. He has spent his life developing his body and denying his emotions, celebrating his virility and greeting each morning with a perfectly tuned instrument full of unlimited potential. His first MS attack might have knocked him into a wheelchair, or he can’t feel his legs, or little johnnie no longer snaps to attention when a beauty pageant parades past him. And what do we do? We expect him to do exactly the opposite of what we have taught him. Now we tell him to reach out for help, express his sadness, his fear, confess his vulnerability, and redefine what it means to be a man in this world. Confess it to his loved ones and confess it to a stranger in a therapist’s office. We might as well ask him to take a crash course in conversational Russian. He just doesn’t have the language for that kind of communication. So instead of seeking out therapy, he might self-medicate with alcohol or drugs, or, if he is mobile and can still work, stifle his feelings by putting in extra hours.
What can we do to help? The clinical therapy community is on top of this, developing approaches to draw men into talk therapy programs. Psychologist and masculinity researcher James Mahalik, PhD suggests that one way to convince more men in general to seek help is to convince them that the things they need help with are “normal.” In this regard, Mahalik says, psychology could take a cue from the erectile dysfunction drug industry. “Men are going in to see their doctors much more about erectile dysfunction now, after the ads for Viagra and other drugs, because there’s so much more awareness,” he explains.1 In other words, since the stigma of seeking help for erectile dysfunction has been removed by the availability and advertising of Viagra, seeking counseling support could become acceptable as well if it is promoted in an equally effective way.
One effective way to remove the stigma of therapy, according to psychologist John Robertson, PhD, is that therapists could alter the terminology used to describe therapy programs by emphasizing self-help and achievement, two concepts that men have been conditioned to see as acceptable for the traditional male. Something as simple as using the word “consultation” rather than “therapy.” In the case of general mental health counseling among the able population, Robertson himself advertises for his private practice by offering skill training such as parenting or anger management, a much more attractive lure than using the term “personal development.”
How can we apply these concepts to chronically ill men? What with the popularity of social media, online disease support groups offer a place to vent while maintaining anonymity. Why would a man with MS choose individual counseling over an online support group?
Part of that choice might be generational. Millennial males have been socialized to be much more open and emotional than their Baby Boomer counterparts. They are also more computer savvy than older men and could more easily exercise both options of online forums and face time with a therapist. Our Boomer buddies tend to isolate themselves even as they seek out online forums.
Determining which approach would be more effective depends on the needs of that particular man. There are numerous advantages of having face time with a counselor if there could be a team management approach to his care. If, for example, he needs physical rehab to get back on his feet and he is suffering from depression, or grief, shock and disbelief because he is newly diagnosed, and he is grappling with erectile dysfunction, an integrative therapy program will keep his professional caregivers in the loop and give him the best shot at recovery and maintenance.
For men as well as for women with MS, finding the optimum care program is a challenge. We all tend to piece it together with the resources that are locally available and try to fill in the gaps by searching the internet.
One good resource that men have always had at their fingertips is women. We females are experts of the confessional. We know how to listen and we’ve got the language for emotional communication and connection. The wisest among us will also learn the language of men, learn what they mean when they use certain terms, withhold judgment, and meet them somewhere in the middle. It’s the least we can do for our wild, woolly dear ones. We are partly responsible for making men the way they are, and we can all stand to be reminded that inside, men and women feel their lives in exactly the same ways.