Relapsing-remitting multiple sclerosis, the most common type of multiple sclerosis, is at least two to three times more common in women than in men. Researchers have long been puzzled by this reality. Various theories have been advanced to explain this discrepancy in numbers and various studies conducted, though inconclusively. It has been thought, for instance, that female hormones might play a role.
However, the most recent, and the most promising research points to an essential difference in brain chemistry between men and women. It has been discovered that a protein “gatekeeper” that controls what gets past the blood-brain barrier is more prominent in general in those diagnosed with MS, and that women produce far more of this protein than men.
Further research is presently underway in hopes of learning more about this protein and how it functions, which may lead to new and more effective ways to treat the disease. If the “gatekeeper” can be controlled, it may be possible to prevent immune cells from crossing the barrier.
In any case, this reality of being in the minority may sometimes be frustrating for men. Much of what is written on MS naturally comes from the woman’s perspective, and MS support groups tend to be heavy on the female side. Of course, many of the symptoms we experience in MS are the same no matter what sex is involved, providing us with an equality in experience. Some concerns, however, can fall outside the male frame of reference, and they are concerns that do often arise in support group conversions. Whether the woman with MS should have children, for instance, or what difficulties she might expect in pregnancy, or whether she should breastfeed.
Needless to say, men suddenly fall out if the discussion.
There is a male frame of reference that also differs from that of the woman. Men and women both face traditional expectations for behavior and in the realm of emotional response. Men feel that they are supposed to be in control, that they need to function at a high level at all times, especially where strength and assurance are involved. No one wants to feel that he has let a spouse down, but I think this feeling can be especially acute in men. We must be strong, reliable, stoic, able – and suddenly we are not.
I myself was married just one year before being diagnosed with MS. I went from being healthy, able, strong and energetic to being ill, incapable, weak and exhausted. I felt intensely that I had let my wife down. I was not what I had promised to be. I concluded, as many men probably do, that she might have been better off without me – with a real man, so to speak.
Well, this is the low point, and we do find, happily, that we regain our strength over time, in RRMS, anyway. But it is a dark time when one would really appreciate having another man to talk to. Our minority situation becomes distinctly pronounced.
As always, it is important to retain a sense of humor, to look at things from the bright side and to keep pressing forward. I observe, for instance, that I have rarely had the pleasure of being in the midst of so many members of the opposite sex. Most guys would give an eye tooth, right? How many female friends do I have online? Hundreds? That’s right. I’m a minority member of an exclusive group, and I reckon there’s some kind of luck involved in that.
Are you a man with MS? Do you feel secluded when much information about multiple sclerosis focuses on women?
Richard was raised in Portland, Oregon and diagnosed with MS in 2007. Within 3 years, he decided to retire early, at 55, and move to Bali with his wife, who is originally Indonesian. From there, he continues to write about experiences with MS as well as his various adventures on the island.