We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
This article appears in our Summer 2005 issue, Truth & Consequences. Subscribe today!
Feminist author and playwright Paula Kamen has been plagued with one nasty and highly annoying headache for almost 15 years. Hobbled by pain and in search of a diagnosis, Kamen tried everything from massive amounts of drugs to acupuncture to a wheat-free diet to a vibrating hat to surgery but could not find substantial relief for her ailment. Her recently released memoir and sometimes-black-comedy, All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache, recounts Kamen’s often absurd journey through both Western and alternative medicine. Along the way, Kamen, 38, discovered that women’s experience of chronic pain and fatigue has been unjustifiably closeted for political reasons—and is a worthy feminist issue that does us no good to continue to ignore. The following is an excerpt from her book.
When I ran into her at the acupuncturist’s office, Jane, the sister of a friend, told me she had been diagnosed with a form of ms years ago. No one at her full-time job at a textbook publisher knew about it. When the company laid off dozens of workers on the floor above her and moved her there, to work alone, she had the luxury of resting under her desk, undetected, as long as she was able to complete her workload.
Tracy, whom I met at a party, also had what felt like a form of ms, with blurred vision, dizziness, numbness in the extremities, and fatigue—but she did not neatly fit that diagnosis. And that was a major problem in her life, almost as much as the illness itself, as her parents and others thought she was just being dramatic. “I show all the signs of someone who had a stroke, and sometimes I wish I would have had one,” she told me. “Then people would take me seriously, and my quality of life would be the same.”
At a meeting of a women playwrights group, I first got to know Susan, who confided that she had chronic fatigue and was on disability and could not leave her apartment. (Years later, she had a play produced and managed to come see it only on opening night, telling reporters she had “a form of arthritis” to explain her absences from rehearsals. Afterward, she slept for days.)
While doing research for another book a decade ago, I stayed with a friend of a friend in D.C., and then lost touch with her. Years later, she moved to Chicago and called me up. After a few minutes of small talk, she explained why she had been thinking about me since our last meeting: “After you left, I went on a new drug for epilepsy and gained 50 pounds. The entire time, I was thinking, that is what you were talking about happening to you with a similar drug.” She added that she was now going through a very difficult time, being fired from her teaching job after taking too much time off for sick leave. Her epilepsy had worsened, and she was constantly fatigued.
Later on, I called these women, and others like them, the Tired Girls.
As I have dealt with my own secret chronic pain problem over the past decade, I noticed more and more women my age also living double lives. One after another, Tired Girls “came out” to me in separate situations about an invisible illness involving pain and/or fatigue, making me slowly realize the large numbers all around me. In fact, just about everyone has a Tired Girl in their family, even if they don’t yet know it. I had thought I was a freak, but I was actually part of a huge closeted group, one which I wouldn’t have noticed if I weren’t in a similar situation.
Like me, they were private about their problems, which were poorly understood and diagnosed by science. Medical professionals—and the public at large—dismissed their problems as mere “women’s complaints.” Instead of fearing that they were “hysterical” because of media hype about their illnesses or some kind of subconscious cry for attention, I saw the opposite: Like me, they were usually isolated with and shamed by their problems and worried that they were the only ones with them.
Like many of these others, I seemed to also pay for everything I did, such as with having to crash the next day. They also shared my fixation with a limited number of “marbles” (my term for energy reserve units) and constantly worked to ration them wisely. They wasted weeks, and often months, of the year experimenting with new and often totally useless and horrible-side-effect-laden drugs.
Other patterns slowly emerged. We were all likely to first get these problems in our teens or 20s, often with the trigger of a major stressful event or illness, which sent us over the edge. We feared rainy weather because of the pain-aggravating change in pressure. None of us were morning people—and sometimes we were not even night or day people.
Though I have been a writer on feminist issues for almost 20 years, I myself have been slow to identify chronic pain and fatigue as one of them. Only later, while reading medical literature, did I learn to recognize our “invisible” health problems as one related “women’s issue.” Chronic fatigue syndrome, fibromyalgia, vulvodynia (vaginal pain), irritable bowel syndrome, migraine headaches—all have to do with central sensitization (or the brain becoming overly sensitive to stimuli). Instead of our illnesses being “psychosomatic,” as they had been portrayed in the past, scientists were now starting to frame them as “neurosomatic” (rooted in neurobiology rather than psychology).
I gradually realized that women are more likely to share some of the same root imbalances in brain chemistry that make us more prone to such problems of pain and fatigue, as well as depression. Those of us who have one of these things is also very likely to have one of the others. Neurobiology isn’t necessarily destiny, but it can definitely have an influence on one’s health.
Feminist activists have been slow to address the issue of women’s chronic pain and fatigue, to build awareness and tap money for research.
This discovery has also spurred me to investigate with a whole new lens feminist activist history, which has long neglected issues of women’s pain and fatigue. I now better understand—and ultimately question—why feminists have viewed these topics as roadblocks in the advancement of the cause of women’s rights for more than a century.
Men suffer chronic pain, of course, but in general, women are much more susceptible to chronic-pain disorders of all types, with women constituting a majority of those reporting chronic pain across cultures. About 18 percent of women experience migraine, compared to 6 percent of men. (However, until puberty, the rates of headaches in boys and girls are about even, with boys experiencing slightly more by some accounts.) As with migraine, my own affliction, known by the somewhat lame yet aptly descriptive name of “chronic daily headache,” (daily headache) is an overwhelmingly female disorder, striking about 10 percent of women in their reproductive years. (About 4 percent of the population has a daily headache, and .5 percent, like me, experiences this pain as constant.)
Women are twice as likely as men to suffer from other problems (with even worse names) like irritable bowel syndrome, a condition experienced by 15 to 20 percent of the population, and are 2.5 times more likely than men to have rheumatoid arthritis, an autoimmune disorder affecting about 1 percent of the population. They are .5 to 4 times more likely as men to have osteoarthritis, a disorder typically striking up to 80 percent of the population after age 65. And they are nine times more likely to develop interstitial cystitis, a chronic and often painful inflammation of the bladder which affects about .5 percent of the population.
Women are also more likely to report multiple pain sites, intense pain, and frequent pain. In addition, women are more likely to have other disorders involving pain and fatigue, including six times the rate for men of fibromyalgia, which affects 2 to 3 percent of the population.
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A Concept of Justice that Doesn’t Include Incarceration
Prison-abolition activists often talk about a process of “decarceration,” where public institutions like schools, medical centers, and workplaces encourage free movement instead of selective criminalization and targeted surveillance. In practice, decarceration might mean relying on restorative-justice methods in schools, like using escalating accountability rather than suspending students and employing other strict punishments. It might also mean decriminalizing drug use and providing affordable healthcare for those with addictions. These solutions address the harm that affects individuals and communities rather than using the state to isolate them in private prisons.
Restorative justice addresses and reduces harm in other ways. Rather than putting offenders away, ostracizing them, and revoking their citizenship, restorative justice is deeply rooted in healing, care, and rehabilitation. Its methods are meant to not only address the actions of the offender but, inherently, to make space for the victims and communities who are most affected by the assault.
In Cosby’s case, restorative-justice methods could have been instituted decades ago by acknowledging the experiences of the women he victimized—starting with believing them and holding him accountable.
Of course, these chronic pain disorders, and their relatively high reported rates in women, are not just genetic in origin. They can all be influenced by social and psychological factors. Studies have shown that women may have more societal “permission” than men to express their pain and seek treatment. Women are also more likely to suffer from depression, which can aggravate and often coexists with chronic pain, as a part of the same imbalance of serotonin and other neurotransmitters. And, ironically, even when they may feel more pain biologically, women may still react to such pain with more “skill” than a man, as they have been shown to have greater coping strategies, such as with expressing feelings and seeking emotional support.
Hormones are thought to be a factor in creating women’s greater overall incidence of central sensitization. At the same time, hormones affect blood vessel reactivity, a major source of head pain. (Backing up this claim is one recent study published in the journal Neurology about male-to-female transsexuals getting significantly more migraines—at a rate of 26 percent surveyed—after hormone therapy.)
But it’s not all hormone-related, as indicated by the finding that 14 percent of women in their 70s experience migraines. Some established pain researchers describe structural differences in the female brain that may help determine how strongly pain signals are felt. Women’s immune systems, which are interrelated with their neurobiology, also differ and may play an influence, as autoimmune disorders strike about three times as many women than men. Researchers are currently looking at the 80 autoimmune disorders—including rheumatoid arthritis, multiple sclerosis, lupus, and Graves’ disease (which affects the thyroid)—as part of the same phenomenon, that of the body attacking itself, often resulting in fatigue and pain.
They have also seen autoimmune disorders as “comorbid,” or more likely to coexist with those with headaches than with others in the population, indicating a common underlying mechanism.
Despite these facts and figures, feminist activists have been slow to address the issue of women’s chronic pain and fatigue, to build awareness and tap money for research. The women’s health movement (a branch of feminism that emerged in the 1970s) has generally been apathetic, if not resistant, to these problems. In their efforts to counter enemies portraying women as essentially “hysterical,” feminist thinkers have gone too far to the opposite extreme in denying chronic pain’s reality, portraying it as mainly a social construct, a nefarious patriarchal tool of propaganda against women.
No wonder the Tired Girls of today still find it hard to come out. After all, we have been fighting the idea of women as “the weaker sex”—and only being weak—for centuries. This view of women as biologically inferior, and hence inferior overall, has been the main societal justification for widespread discrimination in everything from voting rights to education to careers. So instead of addressing women’s chronic pain as biologically based, many feminist intellectuals continue to support a seemingly more “enlightened” view: that chronic pain and fatigue are results of the patriarchy (and maybe American capitalism and globalism, too). This includes from the very real problems of domestic violence, sexual abuse, and menial, repetitive “pink collar” jobs.
While social pressures certainly play a part in the development and exacerbation of chronic pain, this overall denial of chronic pain as also biological has taken its toll on patients—the majority of whom are women—in further isolating us and discouraging medical treatment. To acknowledge the truth that women are biologically more prone to pain disorders than men, one would risk sounding as condescending as the famously paternalistic Dr. Silas Weir Mitchell, the influential pain doctor and strenuous opponent against women in higher education.
In a notorious observation from his 19th-century book-length essay, Doctor and Patient, Weir Mitchell blames women’s greater levels of pain on their “thinner blood.” But instead of using such information to limit women, I argue the importance of discussing these so-called weaknesses in order to address them—and then move on.
Much of the focus of the women’s health movement of the ’70s had to do with reframing gynecology and childbirth as a “natural” process. In fact, the two main issues addressed by the women’s health movement have been reproductive rights and eating disorders, challenges that have long been informed by expectations and limitations imposed on women by a larger society. Activists at this time were understandably not eager to acknowledge that women were in any way neurologically different from men, as that would continue to be an excuse to keep them subservient.
Accordingly, literature that specifically addressed women and chronic pain was very sparse in the ’70s and ’80s. One of the rare articles was Dorothea Z. Lack’s 1982 essay, “Women and Pain: Another Feminist Issue,” in the journal Women & Therapy. Like other feminists at that time, Lack did not address pain as more common in women, but instead critiqued how women are mistreated as pain patients, and her arguments still apply today. For example, she notes differences in the terminology used in the medical records of female and male patients: In the typical female patient’s record, she found, observations about chronic pain are often fixed on marital status, appearance, and sexual attractiveness.
Further, a doctor might say a female patient “claims” to have pain, while stating that a male patient is “experiencing” pain. Although they had the best intentions, some feminists in the ’70s and ’80s acted as adversaries of female pain patients, denying their realities as valid. I have only noticed this after experiencing pain myself, when I have recently reread such authors I had previously never questioned. For example, one of my most dog-eared books is the 1978 (and recently reissued) classic medical-industry critique For Her Own Good: 150 Years of Doctors’ Medical Advice to Women, by women’s health movement pioneers Barbara Ehrenreich and Deidre English.
Central to this book is an analysis of the meaning of women’s “hysteria” from the 19th century as a form of social protest or resistance. It starts with accounts of some of the most prominent figures of that time, including Jane Addams, Margaret Sanger, and Charlotte Perkins Gilman, all of whom fell mysteriously ill in their 20s (the typical age where chronic fatigue and pain problems first strike). Ehrenreich and English confidently describe their illnesses as a subconscious reaction of these ambitious and talented women to the limits on their opportunities.
Princeton professor Elaine Showalter took a similar tack in her 1997 book Hystories, attempting to debunk the much-discussed diagnosis of chronic fatigue syndrome by blaming it on “fin de siècle anxiety” and media hype, and classifying it in the same dubious category as ufo sightings and Satanic ritual abuse. Ironically, this feminist critic, whose ideas about sickness as a cultural expression were invigorating and validating in the ’80s (when she published the psychiatric history The Female Malady), acts today as one of the greatest adversaries of women with chronic fatigue syndrome. The same argument that seemed validating to “healthy” ambitious women 25 years ago—that women don’t really have biologically rooted chronic pain—seems invalidating to women suffering real and disabling invisible health problems today.
Women today have greater permission than we once did to discuss medical ailments of all kinds, no longer assuming that our problems are ones to be suffered alone. We talk about pre- and postpartum depression, which affects 10 to 15 percent of mothers. We’re less defensive about addressing pms, which is suffered by 40 to 50 percent of women, and even pmdd (premenstrual dysphoric disorder), a more intense form of it, experienced by an estimated 3 to 10 percent of women. And, not incidentally, we have the benefit of very recent biological research on women and pain, which actually didn’t gain steam until the late ’90s, after women had at last—thanks to the work of feminist medical activists—been included as subjects in drug research.
As feminists, we’ve fought against other realities we once shrank from naming, such as “workplace harassment” and “sexual abuse.” In the beginning, these struggles also sounded highly suspect, and even absurd, in the greater society. As women, we dared to name problems that were previously accepted as “just life,” as Gloria Steinem has quipped. While a new name for an old problem may raise red flags of suspicion, we have to realize that in every era, the naming and classification of diseases has always been political, and it will only continue to be so.
Just being a woman is in no means an absolute indicator that one will be tortured by chronic pain; we are all individuals with tremendous variation existing among us. “Quantitative differences between sexes are smaller than differences within each sex,” noted Dr. Roger Fillingim, a noted scholar on gender and pain, in a presentation at the annual American Pain Society medical meeting in Chicago in 2003. And I do not interpret women’s greater incidence of chronic pain and fatigue as evidence that we are inferior. I recognize that men have their share of problems, also rooted in genetic differences (and varying social forces)—among other things, men are much more likely to have cluster headaches, personality disorders, alcoholism, autism, criminal histories, schizophrenia, and suicidal tendencies.
But, somehow, our culture has not used these facts to keep them out of public life, as they have with “women’s” illnesses. The reasoning through the eras has been that it’s not a risk to hire a man, despite that he is more likely to go on a workplace shooting spree than a woman, who is more likely to have a headache at that time of the month.
My hope is that more medical activists will expose these myths about women and agree that we are neither totally weak (as the patriarchy has said) or totally strong (as old-school feminists have held, in reaction to the patriarchy). I’m still waiting for the main goal of the women’s movement to be achieved, for everyone to acknowledge women and men as flawed humans deserving of equal rights. Like men’s, women’s bodies have both strengths and weaknesses. This is no longer a radical concept, but one whose time has come.