Years Ago, More Men Than Women Were Diagnosed with MS
Late last year, the estimated number of people living with multiple sclerosis in the United States was revised upward — from 400,000 to 1 million. The old figure had been suspect to many living with the disease for decades. While still an estimate (as MS is still not a disease which doctors are required to report to the Centers for Disease Control and Prevention), it’s likely much closer to the actual number of people with MS. If we don’t know the exact number, it’s also difficult to tease out specifics as to who gets multiple sclerosis. One thing that has been ascertained, however, is that women are diagnosed with MS at a rate two to three times higher than men. This wasn’t always the case, however. As little as a century ago, men were diagnosed with the disease at nearly the same rate over women as women are now diagnosed over men. While there is no scientific reasoning as to why men were once diagnosed three times more than women and now the trend is reversed, anecdotal evidence suggests that women presenting with what we now know as symptoms of relapsing-remitting MS were often discounted and told it was all in their head. The irony isn’t lost on anyone that it really is “all in our head” — and sometimes spinal cord.
For the First Time, I Joined a Minority Group
So what is it like to be a man living with a disease that affects nearly three times more women than men? It’s different today from when I was diagnosed. At the time of my diagnosis in 2001, I’ll admit to some trepidation as to that very topic. 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 & Latino/as.) I didn’t know what to expect from the disease in general, let alone what to expect from such a gender difference. So I suppose I felt apprehensive about that part of it, but at the time I didn’t think much about it. You might say I had other issues related to MS on my mind.
MS for Men and Women Is More the Same Than Different
In the years that have followed, however, I’d have to say that while there may be societal issues having to do with being a man and not being the main earner or provider in the household, etc., I haven’t found the experience to be much different from that described by my women friends living with MS. For me, getting diagnosed with MS took about 15 years of symptoms being misdiagnosed by doctors (and often excused by me), so the process wasn’t unlike that of many women. I’ve found the services (and even male representation in literature) from patient-advocacy organizations like the National Multiple Sclerosis Society and MS Ireland to be even-handed and non-gender-biased. In fact, I’ve found that many organizations are particularly reaching out to men in an effort to meet any specific needs men with MS might have that differ from women’s needs.
Coping Mechanisms May Be What’s Different
How does it feel to be a man living with MS? With very few exceptions, I guess you could ask a woman as well as you could ask me. 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 may process and cope differently from my female cohort with the disease, but at the end of the day there really isn’t much of a difference I can see from this side of diagnosis. Wishing you and your family the best of health. Cheers, Trevis
