At the national conference for the Multiple Sclerosis Society of Ireland, for which I served as emcee, preeminent researcher and clinician Gavin Giovanoni of Barts and The London School of Medicine and Denistry made a statement about gender and MS which pricked my ears: It’s established that in the beginning half of the last century, men were diagnosed with MS at between two to three times the rate of women.
Diagnostic statics according to gender
There is conjecture as to why that was, but the overriding opinion is that women were not taken seriously when presenting with the on-again-off-again symptoms many of us remember from the early days of our disease, even the pre-diagnosis days when we lived with MS. By the time I was diagnosed in 2001, the diagnosis statistics had flipped, and woman were being diagnosed with multiple sclerosis two to three times more frequently than men. According to Professor Giovanoni, that gap is now between four to five times more women than men in many developing countries in the world.
As MS is not yet a reportable disease in much of the world, these figures are far from solid evidence, but the trends are generally accepted as true.
The professor’s remarks brought back to mind one of the things I thought about when I was first diagnosed. I realized that I was a man living with a mostly women’s disease. As a white, middle-class man living in America, it was my first time being in a “minority.” (For more insight into what it’s like to be a minority with MS, have a look at the National Multiple Sclerosis Society’s pages on African Americans and Hispanics and Latino/as.)
Losing “manly” things to MS
Once I got my head around the “manly” things that MS had taken from me – the ability to be the (physically) strong one in a relationship, my being the primary income earner in the house, the sexual difficulties MS can bring – I began to realize while there may be societal issues attached to being a man with MS. However, in general, I haven’t found my experience with the disease to be much different from that described by my women friends living with MS.
Multiple sclerosis is an incurable, degenerative, immune-mediated neurological disease that interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. MS is all of that for males and females. It affects each person differently, be they man, woman, or child.
I know other men with MS who have had similar experiences with coming to grips with being a man living with this disease.
I was part of the first men-only MS self-help group in the US. That was perhaps the part that was most difficult for me. I wasn’t ever really the “self-help group” kind of guy. I was more a “get your crap together and get on with it” sort of person. But having a group of like-gendered people with whom I could talk with, listen to, and commiserate was far more rewarding than I’d expected.
Let’s face it, men have different “plumbing” than women. The way that MS affects us sexually is different. The rest of the physical symptoms of the disease are pretty much experienced the same way. It’s the mental, psychosocial, and societal issues and how we cope with them – both inherently and by learned behavior – which are most different for men and women with multiple sclerosis.
Men may process and cope differently from my female cohort with the disease. We experience the disease pretty much the same way. It’s how we experience the experience which seems to be the greatest difference.
Wishing you and your family the best of health.