Women and MS
This article is a companion piece to one of my previous articles titled: MS AND THE MANLY MAN. In the earlier piece, I discussed the unique challenges men with MS face. Although fewer men develop MS than women, they tend to have a more aggressive, disabling, and rapidly-advancing course. The bad news about women and MS is that the ratio of women to men who develop it has increased from 2:1 to 4:1 during the past 50 years.
Like many other facets of the disease, the reason for that increase is unknown. Increases in obesity and smoking among women have been cited as possible factors, as well as a trend towards earlier onset of menstruation. Sex hormones are thought to play a part and that has prompted several recent studies. But the results have not clarified the role female hormones play. Instead, one study showed that hormones by themselves weren’t statistically significant, but did indicate a vital relationship between hormones and vitamin D. The emergent theory is that they work together as neuro protectors, but researchers don’t yet know the why and how of that partnership.
The neuro-protective benefits of estrogens are most obvious in pregnant women. Women often enjoy uncharacteristic remission during pregnancy, only to relapse, sometimes severely, within a few months after giving birth. Some disease-modifying therapies should be discontinued during pregnancy, and the effects on breast milk aren’t clear for many of them. Coordination between OB/GYN and neurological care teams can greatly benefit women of child-bearing age, but that is not yet an industry norm.
There are so many connections between being a woman with MS and being a woman in this patriarchal culture in general that it would be impossible for me to write about one without examining the other.
When I gathered my thoughts to write about women with MS, the title itself presented a dilemma. As a companion piece to MS AND THE MANLY MAN, I wasn’t comfortable titling it MS AND THE WOMANLY WOMAN or MS AND THE FEMININE WOMAN. The context might seem similar but they are not at all directly comparable, and the adjectives themselves sounded demeaning to my ear. Using the title WOMEN AND MS sounded too common, but I settled on it just to be safe. This dilemma is a direct reflection of the complexity inherent in being female in our culture.
We must discuss work when we talk about managing multiple sclerosis. Already in place is a lack of equality and support for working women—all working women. Women are still paid less than men, still take family leave without pay if they decide to have children.
Like a disabled person, a woman needs modifications to move more easily through the world. This analogy might sound denigrating, but that is because our culture fails to serve the needs of both. The workplace is still sadly neglectful of worksite childcare needs for mothers and modifications for disabled workers. There is no government-subsidized day care, nor is there subsidized or privately-funded on-site child care for working mothers. Once a woman becomes pregnant, she’s on her own to sort out the logistics—and if she’s married, she will not likely get help from her spouse. Ideally, she must have a livable wage and lots of help with the child care and housework. So, too, the disabled among us.
The feminization of poverty takes on a whole new dimension when a poor working woman develops multiple sclerosis. In my own experience, I observed how corporate culture arbitrarily accommodated able-bodied poor women with children, and those who couldn’t adapt to that mostly rigid environment fell off the grid. The dearth of affordable child care, the exasperating obstacles women encountered to procure their ex-husbands’ overdue child support payments, the phone calls from school that made them rush out the door to scoop up a sick child and spend the rest of the day at home, were scenarios I watched with sympathy and indignation during my working life. I never had children myself. Though I admired their ability to run that daily marathon and pull it off, I didn’t want to join the club. I knew I couldn’t do it all, be a superwoman, be all things to all people at all times. And that was before I developed MS. Sadly, I also watched women severely judge other women for their perceived failure to finish the long sprints, recharge, and refresh themselves for the next leg. Women work furiously and expect other women to follow suit. Now add multiple sclerosis to those many stresses; MS patients instinctively hide their condition, terrified that they’ll lose their jobs if it is revealed. The day isn’t over when a woman, with or without MS, leaves work at five o’clock. No matter how they feel, they’ve got to feed and look after their children.
You would think that our culture would hold women in high esteem for their tireless work and flexibility despite being underpaid and overworked. Yet, when a woman becomes ill and seeks medical care, another set of prejudices kick in.
In a November 2015 installment of the Diane Rehm show on National Public Radio, a doctor described what happened when he took his wife to a New York city ER. There were numerous people in line ahead of them, and his wife was largely ignored. She suffered tremendous pain, and when a nurse finally attended to her for a brief moment, she started to weep from the pain. “Now don’t cry, honey,” the nurse said, and disappeared. Eight hours later, she was diagnosed with an ovarian condition that causes excruciating pain and which required surgery. As the doctor/husband unsuccessfully tried numerous times to grab the attention of doctors and nurses passing by his wife’s gurney, pleading with them to at least treat her pain, he got a strong message that women are still considered hysterical and overly dramatic—and therefore not credible.
One explanation for this is that men are still the industry standard for presenting with symptoms of illness.
Historically, clinical trials used only men, so text book descriptions of disease symptoms have solely been based on those clinical observations. More recently, medicine has begun to acknowledge the differences between how men and women experience disease symptoms. A classic example is how heart attack symptoms manifest themselves. Women often present with indigestion, jaw and back pain, nausea, and vomiting with no chest or arm pain. Unfortunately, women that show uncharacteristic symptoms have often had their diagnoses delayed, which sometimes lead to their unnecessary deaths. Simply put, the expression of pain differs between men and women.
Perhaps the most widely understood version of that scenario among MS patients is the gauntlet women run while experiencing their first MS attack. Doctor after doctor will, in many cases, tell a woman she’s crazy, depressed, stressed, having a panic attack, drug-seeking, exaggerating, or out-and-out lying. The most tenacious among them will ignore those doctors and keep pressing on until someone takes them seriously.
The focus of this article has been on women of child-bearing age; MS manifests in women at the average age of 29, during a stage of life when women are juggling work and family. There is much to say about aging women and MS, but I’ll stop here. To read more on MS and aging, see my article titled GROWING OLDER WITH MS.
In addition—and in closing—there are many more facets to being a woman with chronic illness in a patriarchal culture. The story of women continues to be written by all of us, male and female. We can only hope that medicine—and our cultural attitudes-- will catch up someday soon.1-4
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