Thank you in your interest in MenWithMS.org and the comprehensive Men With MS educational research survey, which is in support of an upcoming, new book and this online educational and support community expressly by, for, and about men with MS—i.e. the medical, social, and emotional aspects of MS from the male perspective.

About the project …   

Benefiting from the perspectives of hundreds of men living with Multiple Sclerosis from all walks of life, as well as leading MS medical and mental health experts, the objective of this comprehensive educational initiative is to present an insider’s view of what it feels like to be a man facing the challenges of MS—highly personal, anecdotally rich, unflinchingly honest, and in our own words.

But why just men with MS? Women with MS share many of the same issues, feelings, symptoms, and life challenges. Right?

Absolutely. But the bottom line is that men with MS are “outnumbered” by women by a 3:1 margin. As a result, many of the excellent MS educational and support resources out there tend to include a kind of unintentional bias that disproportionally favors the female perspective, anecdotally—i.e. a tendency to present MS through more of a female-centric lens rather than through a male one.

Equally important, for us men (some say due to basic “male wiring”) sometimes talking about one’s own health—and particularly the medical, social, and emotional challenges that MS can throw at us—can seem hard to talk about and, therefore, to effectively unpack and untangle.

And all of that is further exacerbated by some entrenched, culturally reinforced constructs about what it means to “be a man” in our society; the realities of MS for men can sometimes seem to run counter to those stereotypes. That can add additional layers of complexity to the experience of being a man with MS.

The consequences of all of those factors, combined, is that it’s easy for us men with MS to feel under-represented and, therefore, more isolated.

What’s been missing is a comprehensive, up-to-date resource expressly by and for those of us with MS who happen to be men.

Sometimes it’s just a little easier relating to other males and hearing other male perspectives on what it means to live with MS—especially when it comes to talking about many of the sensitive physical and emotional dimensions of how MS typically affects men…things like bladder and bowel control, clinical depression, erectile dysfunction, and sex, for example, as well as career and money issues, changes in established roles within the family and with one’s spouse or Significant Other, and more.

There are some excellent books and other support resources just for women with MS, as well as ones designed to apply equally to men and women, too. That’s great and very important; we just need more specifically for men, too.

In our own words: leveraging our individual experience with MS into something bigger…

So, by addressing both the medical and the emotional, and some of the major areas of concern for men with MS, the goal here is a “leveraging” of our individual stories, or “voices,” into something larger—the sharing of real, first-person perspectives of many men living with MS. That—and facilitating a kind of virtual conversation about all of these issues—is what this Men With MS project is all about.

Despite how individualized, unpredictable, and often isolating this complex and enigmatic disease can be, we’re not as alone as we sometimes feel. There’s strength in numbers, and also tangible value in learning from and supporting one another, and hearing advice and personal insight from other men with MS who have “been there” and have, therefore, gained perspective and wisdom from the MS experience.

Welcome to the Men With MS community.

Peter McCann

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