When Cynthia Toussaint read the New York Times’ January 14, 2008, front-page story (“Drug Approved. Is Disease Real?”) about Lyrica, the drug approved by the FDA to treat fibromyalgia pain, her reaction to the skepticism put forth about the condition’s existence was immediate and impassioned. In the first paragraph reporter Alex Berenson writes, “Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.”1
“I was personally insulted and shocked. It hurt so many people, especially women,” Toussaint says. She considers the condition’s front-page treatment to be a reflection—an indictment, really—of how society views women: weak, vulnerable, and dependent.
“It took us back to the dark ages,” she adds.
That Toussaint is quick to associate the Lyrica story with far-reaching implications for gender bias in chronic illness and chronic pain is not surprising. As the founder of For Grace, an organization dedicated to empowering women and ensuring equality in treatment for women in pain, she is professionally entrenched in the politics of pain and gender. She’s also a patient whose pain was routinely dismissed for years, and is all too aware of the gender bias in treatment and diagnosis of pain.
Widespread pain conditions like fibromyalgia or chronic fatigue syndrome are especially social conditions, since their symptoms have a direct impact on a patient’s ability to maintain various roles and identities. Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases. Add to this process the fact that their symptoms and complaints are routinely viewed with skepticism from physicians, loved ones, or both, and the alienation of individual patients takes on more momentum. In The Culture of Pain, David B. Morris writes that pain “cannot be reduced to a mere transaction of the nervous system. The experience of pain is also shaped by such powerful cultural forces as gender, religion, and social class … Even when it just grinds on mercilessly, pain, like love, belongs among the basic human experiences that make us who we are.”2
Given how many people experience chronic pain—some 116 million Americans—and how harmful and often ineffective painkillers can be, it is hardly surprising that pain is a hot-button research area.3 Yet what makes pain a research field with so much pull is also what makes it almost impervious to quantitative data: pain is inherently subjective. Unlike blood tests that reveal certain abnormalities or X-rays or CT scans that reveal fissures, breaks, or masses, there are no universal, definitive tests for pain. Most often, the ubiquitous Comparative Pain Scale that asks patients to rate their pain from zero to ten (ten is the worst pain imaginable) is the standard benchmark. Pain is self-reported, and there is the fundamental problem: the person reporting it must be beyond skepticism, hesitation, or bias. While many would like to believe we’ve abandoned the days of hysterical illness and great strides have been made in the realm of sex-based research and understanding of psychosocial and biological differences in the perception and experience of pain, the female patient still confronts bias. If she is a patient of lower socioeconomic status, the difference is even more pronounced.
Research is beginning to show some promising information in terms of the perception and manifestation of pain between the sexes, data that could lead to more effective treatments and dispel the lingering stereotypes regarding both men and women who live with chronic pain. As it pertains to research, a person’s sex as male or female refers to his or her biological and chromosomal attributes, while a person’s masculine or feminine gender refers to the cultural roles and expectations attributed to that person. We talk about sex when discussing research, since these biological differences play an important role in the development and perception of pain, but we more commonly discuss gender when referring to patients living with pain. Sex-based clinical research that accounts for the differences between men and women is an indispensable part of more effective treatments and improved outcomes. While much work remains, the changes in research, policy, and advocacy that came about in the 1990s and early 2000s provided a foundation.
At its core, the Lyrica-fibromyalgia controversy has less to do with the specific diagnosis and all to do with the nature of pain itself. Of all the symptoms that manifest from chronic ailments, pain is the most frequent unwelcome accompaniment. An estimated 25 percent of the population lives in chronic pain, and it accounts for more than 20 percent of visits to physicians. According to the Chronic Pain Research Alliance, inadequate physician training and education in diagnosing and treating just six of these pain disorders—fibromyalgia, chronic fatigue syndrome, endometriosis, interstitial cystitis, temporomandibular joint disorder (TMJ), and vulvodynia, which affect 50 million women—adds as much as $80 billion in both direct and indirect costs annually.4 From multiple doctor visits to lost wages and productivity due to flares, chronic pain is an expensive, exhausting endeavor.
Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible. Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house. Over time, chronic pain erodes so many aspects of the patient’s identity that sometimes it seems all that is left is the minute-by-minute experience of simply surviving the pain itself. It makes the threads of everyday life blurry and out-of-reach, yet pain becomes the narrow, sharp lens through which everything else that matters is filtered. This is the reality behind the statistics, the jobs left behind, and the co-pays for painkillers that invite as many problems as the fleeting relief with which they tempt.
The women’s health movement did a lot to change the doctor-patient relationship and the quality of life for women, especially those living with chronic illness, but it did not address gender and chronic pain. In fact, pointing out that women lived in pain that just might be associated with hormonal and other physiological differences between women and men was anathema to the push for recognition of women’s equality. In what many consider the third wave of the women’s health movement (with the Progressive Era in the early twentieth century and the women’s health mobilization in the 1970s being the first two), the 1990s saw an increase in the number of female physicians and medical school students, and more female representation in Congress; ultimately, the federal government could no longer ignore the glaring disparities in sex-based clinical research.5
In 1990, the Society for Women’s Health Research (SWHR) was founded. A collaboration by physicians, researchers, and women’s health advocates, the organization’s aim was to draw attention to the blatant lack of inclusion of women in medical research and trials supported by the National Institutes of Health and, specifically, the lack of research on the numerous diseases that either solely or disproportionately affected women.6 To address inequity in medical research, the SWHR asked the Government Accounting Office (GAO) to look into the problem of sex-based research and examine if American women were truly at risk due to biases in clinical research. The GAO’s report, released in June 1990, found that the National Institutes of Health’s vague policy to encourage the inclusion of women in its trials was poorly communicated and not well understood in the research community, which clearly did not bode well for the millions of women depending on research to give them a better life.
By the early 1990s, chronic fatigue syndrome was already a contentious issue affecting many women, cause-related marketing for breast cancer was ramping up, and the iconic female survivor was growing more popular in public consciousness. The Americans with Disabilities Act (ADA), which prohibited discrimination in employment, transportation, and other public accommodations, was also passed in 1990. By the end of that decade, almost three-quarters of women of working age with a disability characterized as non-severe were in the workforce.7 It was long past time for women’s health and, in particular, women’s pain as it related to chronic illness, to get recognition. A pivotal point came in 1993, with the passage of the NIH [National Institutes of Health] Revitalization Act, a law written with direct input from the Society for Women’s Health Research that mandated women and minorities be included in all federally funded clinical research and that Phase 3 clinical trials to bring drugs to the market be analyzed by sex.8
The same hormonal and physiological differences between men and women that were problematic for women’s health activists in the 1970s are especially important in terms of how medications and dosages work in male and female bodies. Once again at the request of the SWHR, the GAO stepped in to examine how the Food and Drug Administration (FDA), which has the discretion to approve drugs for sale and as arbiter of what passes muster for safety and quality, handled the inclusion of women in trials for drugs seeking approval for marketing to the public. The subsequent report found the FDA was not effective in managing the presentation and analysis of data in drug development that pertained to sex-based differences.9 In response, both the FDA and the Centers for Disease Control and Prevention established Offices for Women’s Health, another key step in the process toward better understanding, treating, and legitimizing women’s pain.10 The interest in sex-based biology and research continued to grow, and in 1996, the prestigious Institute of Medicine (IOM) received a proposal from the SWHR seeking validation of it and planning out the appropriate direction for research.11 Another piece of the foundation was put into place when the ban on women of childbearing age from participating in early clinical trials, which had been put in place in 1977, was lifted. The ban was a leftover from the thalidomide tragedy of the 1960s and ’70s, when babies of women who had taken the drug while pregnant were born severely deformed.12 The lifting of this ban was a significant step, considering how many women manifest chronic and autoimmune conditions during their childbearing years.13
Sex-based research is a primary area of concern for patients, but it is not the only obstacle. The fact that physicians typically aren’t trained appropriately enough in matters of women and pain is also problematic. This lack of education about women’s health issues was given a boost in 1994, when the guidelines for incorporating women’s health in medical school curricula were published, representing another piece of unfinished business.14 This lack of awareness extends beyond simply matters of reproduction or chronic pain and influences the treatment of women across the disease spectrum. Dr. Sarah Whitman, the psychiatrist who specializes in working with men and women in pain, thinks some of the reason that women are treated differently from men is directly linked to this lack of knowledge.
“For example,” she says, “women’s symptoms of a heart attack are different than men’s; if an M.D. doesn’t know that, they’ll miss a lot of heart attacks in women. Another example is that we used to think that women didn’t get heart attacks until late into menopause—again, lack of knowledge—so a woman in her forties or fifties with either classic ‘male’ symptoms or classic ‘female’ symptoms didn’t get evaluated [or] treated correctly. However, being seen as ‘histrionic’ causes women presenting with classic symptoms to be ‘tut-tutted’ and sent away with a pat on the head.” Her example speaks to the complexity of the sex-gender relationship: biological differences are at play in the manifestations of heart attack symptoms in men and women, but gender roles and assumptions factor into the cultural interpretation of those physical symptoms.
“The intersection of pain and gender is fascinating. But first, I think it’s important to understand how pain, and people with pain, are viewed in our society. The picture isn’t positive. This is true even within the field of medicine, in addition to society at large. It’s quite misunderstood,” says Whitman.
“The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,” published in 2001 in the Journal of Law, Medicine & Ethics, is a seminal study, and not just for its extensive exploration of the literature surrounding gender and pain. Its title alone is provocative, setting its sights directly on the tenor of skepticism that pervades characterizations of women in pain. Part of the problem, as study authors Diane E. Hoffman and Anita J. Tarzian point out, is that the quest to isolate physiological differences between the sexes must also account for the other forces that are involved in the living experience of pain.
“The Girl Who Cried Pain” found that women’s reports of pain are taken less seriously than men’s, and they are less likely to receive aggressive treatment than are men. In fact, research shows that men who report pain are more likely to receive painkillers for their symptoms while women are given antidepressants and are more likely to have their pain dismissed as “emotional,” “psychogenic,” and “not real.”15 A female patient suffers constant, life-disrupting pain and is told it is in her head. She’s given an antidepressant rather than a diagnosis or a painkiller, and her anxiety grows. As her quality of life deteriorates and her pain worsens, she becomes depressed. When she reports being depressed, her initial physical symptoms of pain are attributed to her depression. The farther along she goes without recognition or validation of her pain, the more distrustful of the medical establishment she becomes.
“One issue particular to pain medicine,” says Whitman, “is the caricature of women as delicate, emotional, and prone to difficult-to-understand whims—in a word, hysterical. So it’s easier to dismiss their pain complaints as ‘it can’t be that bad,’ or, ‘she’s just overreacting.’ “
Studies of gender roles and assimilation support and help to explain this continued phenomenon. Women still labor under the stereotype they are weak, and society still often employs the presupposition that men should be tougher and more capable of sticking out pain and illness, making them less likely to talk about it. For example, researchers found that from an early age, males are conditioned to regard weakness, vulnerability, or fear as worthy of shame and embarrassment, while women are acculturated to embrace more community-oriented expressions of pain and to reach out to social networks. Further, male study participants report experiencing an obligation to display stoicism in the face of pain.16 Though she admits it is a generalization, Whitman points to the fact that men are more likely to withhold complaints of pain, but when they do complain, they are more likely to be taken seriously. Men frequently won’t admit they’re experiencing chest pain when they’re having a heart attack, sometimes resulting in death because they did not get to an emergency room in time.
“Some of this is because they fear being ‘wrong,’ and fear someone will think them weak for complaining of something that’s not a heart attack,” Whitman says. Still, prevailing attitudes toward gender and pain work in their favor should they seek treatment. If men do go to the emergency department, they will receive quicker treatment since people will believe they have the level of chest pain they report: it’s a heart attack until proven otherwise. She attributes some of this to the fact that even when the medical knowledge is there, it changes slowly and it usually falls on individual practitioners to keep up with and then incorporate new knowledge into practice. In addition, there’s a lag between when useful findings are published or presented at conferences and when they’re finally included as standard practice. Even more problematic is the fact that gender roles and expectations change even slower than medical practice.
Inevitably, this outdated model where men are stoic and don’t complain and women are histrionic puts men at a disadvantage, too. Prior to the onset of his chronic fatigue syndrome in the winter of 2004, Eric X (not his real name) was more than simply a physically fit, otherwise healthy male. A member of the armed forces, he was in peak physical condition, and in his spare time, his activities included rock climbing, mountain climbing, cycling, and backpacking. In fact, just one month before the onset of the flu-like infection that kicked off his chronic fatigue, he had climbed a 14,000-foot mountain in Colorado. He certainly didn’t fit the archetype of the malingering CFS sufferer that patients find so damning, and he was more surprised than anyone by his deteriorating health status.
“I would say the biggest bias I confront with the disease is my own. I was/am embarrassed to admit to anyone that I have … CFS. I was one of those guys who thought that CFS was primarily a disease of upper-middle-class white women! And to be honest, I can be very suspicious of anyone who says they have CFS. I’m a very practical and analytical person and if I can’t see it, smell it, touch it, taste it or hear it, I have a hard time understanding it,” he says. “My wife (a counselor) has been a big help in helping me come to terms mentally with my condition, but I still struggle. I only tell people who absolutely need to know, like my bosses and some friends. Initially, it helped a lot that people who knew me, knew how active I was, so they understood that something real had happened to me,” he says.
His natural inclination to couch things in terms of what is “real” and measure that against his many physical accomplishments is telling. It is an internal tension that he describes, but it is not just that Eric expects strength and endurance from himself; as so many have observed, external pressure to live up to this is ingrained in our culture.
“I think my life experiences make it more difficult for me … I was high-energy. I traveled a lot and … had a lot of physically demanding pursuits. Those things significantly influenced my sense of self and my confidence. When I was no longer able to do those things, everything changed for me and I struggled,” Eric says. Now a father, he says his family is “my reason for being on this earth, and I think that’s what every man needs—a focus. So I kind of grew out of some of the things that made the fatigue hard to deal with, and they have been replaced with a family.” Eric’s emphasis on how losing those more physical aspects of his identity influenced his confidence and self-esteem speak to the truly social nature of chronic illness: as our ability to do the things that give us pride and identity diminishes, what is left to fill the void? For Eric, and many others patients I’ve spoken with, family and relationships did that.
As Eric’s story illustrates, being active and productive are important elements of confidence and self-worth. For many, this translates into fulfilling employment. Cynthia Toussaint feels women’s pain is also undervalued because historically, they have not been (and often still are not) the primary breadwinners. The reverse can also be problematic: men are primarily defined by their job and earning potential. As Dr. Sarah Whitman has discovered, when illness impacts their ability to meet these expectations, men’s self-esteem can plummet. Since our society is one that places a high premium on hard work, status, and achievement, this is not unexpected. If you break down and report your pain symptoms but they do not improve and your quality of life deteriorates, you are a failure as a patient and as a productive member of society. This may also explain why men are found to wait longer than women to discuss their symptoms with their physicians. In that case, the same inaccurate stereotypes that paint women as malingering complainers put male patients in an equally hamstrung position: both are unable to adequately convey their needs, or their suffering.
There are greater complexities still. For example, the routine attribution of abdominal pain or symptoms to gynecological problems can delay or complicate the diagnostic process. A woman’s age puts her at a further disadvantage in this respect. In a 2008 study in Academic Emergency Medicine designed to gauge gender disparities among emergency room patients complaining of abdominal pain, researchers found that even after adjustments for race, class, and triage assessment, women were less likely to receive pain medication than men, and those who did get medication waited a longer time than male patients for their medication.17 For women under the age of fifty, these results were more pronounced, suggesting an inherent (though unconscious) bias against treating women for gynecologic pain and diseases, which primarily affect younger women. It’s as if the existence of one type of pain, gynecological pain, precludes the existence of other (potentially emergent) sources of pain, such as abdominal pain.
Unless someone has lived with chronic pain or lived with someone who suffers from it, it can be difficult to imagine something can cause significant pain nearly around the clock. “That’s improbable to many people. People assume patients are just complaining too much, not trying their best to get better,” Whitman says. Lack of understanding from physicians is both an individual and institutional problem; even in the last years of the twentieth century, pain was not an established part of medical school curricula.
“People often underestimate how much pain I’m in because I don’t spend a lot of time complaining about it,” Melissa McLaughlin says. “Doctors seem to think I’m exaggerating my number scale of pain because if I were in that much pain, I wouldn’t be functioning, they think. But here’s the thing: I don’t have a choice … my pain is my pain, and if there’s going to be anything else in my life, I have to work through and past it, regardless of how high it is.”
It’s an untenable situation: patients are considered lazy or indulgent if they remain housebound, but should they manage some activity or productivity, then their pain can’t be as severe and exhausting as they claim. Here again we see the contradiction so common in the social history of disease: the absence of outward physical manifestations of illness somehow negates the actual experience of having it. Rather than overreporting pain, as critics suggest chronic pain patients of all varieties do, McLaughlin and others cop to regularly under-reporting it, aligning them more closely with classic “male” stereotypes.
Those skeptical of fibromyalgia as a sound medical diagnosis argue these patients simply don’t tolerate the normal aches and pains healthy people deal with and ignore and that they become fixated on every little symptom, cataloging their list of complaints. Dr. Frederick Wolfe, one of the physicians involved in the 1990 paper that first outlined guidelines for diagnosing fibromyalgia, which has not been linked to environmental or biological causes, counts himself among the skeptics. As stated in the article, he now feels fibromyalgia is “a physical response to stress, depression, and economic and social anxiety.”18
Most patients would describe this relationship in reverse, meaning the physical pain of their conditions coupled with not being able to work and losing social relationships is what increases their stress and depression. This isn’t too different from the same correction I had to make over and over in emergency rooms and ICU rooms when it came to my respiratory problems: not being able to breathe and being hospitalized and away from work caused me stress; stress did not cause my choking phlegm and constricted airways. Perhaps more than any other statement, Wolfe’s makes fibromyalgia a preeminent case study in twenty-first-century social disease, the modern-day physiological equivalent of the “nervous” female patients of past centuries.
“I’ve definitely heard this response/‘explanation’ of fibro before, and have met its believers in person. They are not doctors that I go back to,” Melissa McLaughlin says. “I’ve had enough of being blamed for my illnesses—So what if I was an overachiever? Guilty as charged—but I was not straining myself beyond any limits I’m aware of, not even compared to my own peers. I didn’t have three jobs or need to get straight As. I did what I enjoyed, for the most part, and enjoyed what I did. I’m certainly not going to deny that my fibro responds negatively to stress, depression, and economic or social anxieties, but do I think they are the cause of it? I just don’t. And I don’t because I had none of those issues, not a single one, when I first got sick … I didn’t have any more stress or pressure or anxieties than anybody else, and I certainly wasn’t feeling overwhelmed by them,” she says.
To McLaughlin, labeling her pain as the normal aches that healthy people learn to ignore, as skeptics have characterized fibromyalgia pain, is woefully inaccurate—and unfair. Yet it is something she deals with from friends and family, and especially from health care providers. In the years since she went from a normal, healthy teenager to an adult in chronic pain, she honestly can’t count the number of times her pain has been dismissed, overlooked, or underestimated by a doctor: “Of course you’re exhausted, you’re working too hard” or “You can’t still be in pain, that should’ve gotten better by now” or “I don’t understand how your pain can be worse now than it was the last time I saw you,” are common refrains. When it comes to the severity of her pain, the standard scale is a poor substitute.
“Telling them I’m an eight out of ten on the pain scale—on a fairly regular basis—doesn’t seem to mean as much to them as it does to me,” McLaughlin says. They’re looking for static indices of disease, while she is looking for a way to lead a normal life, to leave the house, hold down a job, someday have a family of her own, to reclaim the social ties and roles her severe, unrelenting pain has taken away from her.
While some deny the existence of the disease and cast symptoms off as histrionic, others are less concerned with semantics and give priority to addressing lifestyle and medical interventions that improve symptoms. “There is no concrete evidence for a physical cause of fibromyalgia … and the patients I’ve treated have done well with increased physical activity, antidepressants, and improved sleep. Why is it important for people with chronic sleep deprivation (with body aches and irritability) to be given the label of ‘fibromyalgia?’ Is it for ease of coding and billing? For destigmatizing a mental health issue? Or for synthesizing symptoms into a syndrome with a name?” asks Dr. Val Jones, a rehabilitation specialist and founder and owner of Better Health, LLC, an online portal of health news and commentary.
Pain specialists like Dr. Whitman urge an integrated model of treatment that doesn’t rely solely on medication and procedures but also focuses on behavioral changes, education, and advocacy. If we looked at chronic pain the same way we approach treating a disease like diabetes—whose regimen includes diet, exercise, and lifestyle changes in addition to medication—then perhaps we could begin to distance ourselves from the notion that if we could just “cure” chronic pain, we would be all set. In The Pain Chronicles, Melanie Thernstrom’s fascinating exploration of pain throughout history, she writes, “The biological view of pain is in conflict not only with the way man through the ages has regarded pain, but with the way in which pain itself is experienced, not as an ordinary physical function, but as an extraordinary state of being … the biological model cannot explain the disconcerting flexibility of meaning in pain.”19 Pain is something that transcends a cure, a far more nuanced and complex entity than a collection of symptoms biology can address.
How much of this gap in diagnosis and treatment is also due to the assumptions physicians and patients bring to their relationship? Here is where the social cues and mores that manifest in the profoundly human interaction between doctor and patient exert their influence. Barbara Kivowitz is a well-educated middle-aged woman, a former therapist who is now a consultant. She is an informed patient and not afraid to speak her mind. Yet she noticed two significant trends in her encounters with physicians. First, when she described her pain, it was often in emotional terms—how miserable she was, how frustrated, how her severe pain impacted her life.
“I wouldn’t hold back. I would assume that my experience of my pain and my feelings about it and intuitions about it were data. For a lot of doctors, that wasn’t data,” she says. In those moments, she detected impatience in her physicians’ demeanor, a resistance to her display of emotions. Second, she noticed a dynamic when her partner, a male, joined her for appointments. He asked questions she would never think to ask, and approached things from an entirely different perspective.
“I do wonder if having the male in the room does automatically up the credibility curve a little bit,” she says. She started talking about her symptoms differently, as if she were a scientist. First she had handwritten score charts of pain spikes and dips and would show the chart. She became deliberate and conscious about when she would release any emotion, and the release was controlled and put within the context of analytic data, establishing more credibility in her reporting.
Kivowitz’s distinction between feelings and intuitions as data versus concrete numbers is particularly compelling in light of research that shows that men and women describe complex pain very differently. A 2008 study found that while women described their symptoms in vague, abstract terms, men used simple, concrete terms. Rather than illustrating how the pain influenced certain activities or emotions, men reported what hurt and where. As such, it was easier for doctors to hazard a diagnosis and then move on to the appropriate course of treatment for their male patients.20 This research also fits in with earlier studies on gender roles and communication analyzed in “The Girl Who Cried Pain,” which found that women were more likely to describe their pain within the context of their relationships and social networks.
Combined with previous data, these findings are actually promising. They provide a theoretical foundation for the fact that some of the reason women feel dismissed or undervalued when they seek treatment for pain isn’t because they are inherently too emotional or too prone to complaining (as we know), but that they are “speaking another language.” This is not to say that women are to blame for the lag in diagnosis and treatment. Rather, it points to some of the possible reasons why this pattern continues, and why physicians and patients alike should consider their modes of communication. Patients shouldn’t be responsible for translating their subjective experiences of living with pain into scientists’ terms anymore than physicians should be expected to extrapolate quantitative data points from vague impressions of pain. But if both sides have a better grasp of each other’s needs and wants, then perhaps a middle ground is feasible. As David B. Morris writes in The Culture of Pain, “When we recognize that the experience of pain is not timeless but changing, the product of specific periods and particular cultures, we may also recognize we can act to change or influence our own futures.”21
These findings also point to an important difference in the way both parties approach this pivotal interaction: physicians are interested in analyzing pain, whereas patients, many of whom have lived with pain for years, are less focused on the analysis of pain itself and more concerned with alternatives to their current pain management. When you consider the distinction between disease (that which can be quantified by tests and results) and illness (the subjective experience of living with a condition), this makes sense.
Like so many mythologies surrounding illness, the mythology of women in pain that has subsisted for so long exists in part because mystery still surrounds it. Pain and gender are irrevocably linked, so it is natural that addressing pain in an effective, comprehensive manner involves looking at the differences between the sexes.
“I’m an optimist by nature, but I believe there’s evidence to support a hopeful outlook. The gains which will come soonest—which actually are occurring as we speak—are advances in the understanding and treatment of pain, regardless of gender,” says Dr. Whitman. “One which will be crucial is a better biological understanding of pain—viewing it as a medical disease, rather than a psychological weakness. Because women are disproportionately affected by pain, this will benefit them the most.
“[Fibromyalgia] is one disorder where we’ve made recent progress. We have great studies using fMRI [functional MRI], which show that the brains of patients with FM react differently to painful stimuli, which points back again to biology. And Lyrica is a medication shown to be helpful in nerve pain, which supports newer thinking about FM being a nerve pain disorder,” Whitman says. Continued research into the biological processes of diseases, including the role of hormonal fluctuations in the manifestation and perception of pain in women, are important on many levels, including treatment, quality of life, and patient validation and identity. The road is fraught with misfires and wrong turns, however. For example, in 2009, researchers thought they had isolated a virus (XMRV retrovirus) believed to be involved in chronic fatigue syndrome, but by 2011, a more comprehensive study disproved the association between the virus and the condition.22 That same year, Science fully retracted an article that linked XMRV to chronic fatigue syndrome, due to contamination of blood samples and misrepresentation of data.23
A diverse and expanding body of research conducted in the 1990s found sex-based differences in risk of disease, progression of disease, responses to treatments for diseases, and overall outcomes of disease.24 The focus intensified in 2001, when a groundbreaking report was published by the Institute of Medicine at the behest of the Society for Women’s Health Research. The IOM study stated that studying sex differences could yield significant improvements in the health and lives of men and women, that research on sex differences should be conducted at every level in the body and at every stage of life, and that the research on sex differences should also include studying how men and women respond to medications.25
Why does sex matter so much, especially when it comes to disease and medication? For one thing, experts explain that sex is “both a phenotype and a genetically based bio-marker that may predict disease susceptibility, onset and severity or response to therapy.”26 We see this in terms of how many more women experience chronic pain and chronic pain conditions; but another example of this is cardiovascular disease, which affects both men and women but in men causes twice as many deaths.27 In yet another area, while females are more prone to depressive and anxiety disorders, males are more prone to developing antisocial disorders and Tourette’s syndrome.28
We must also consider the difference in average height and weight for males and females, which scientists call sexual dimorphism. Sexual dimorphism is related to differences in gene expression between men and women, and some of those genes whose expressions are different can also cause differences in the way we metabolize drugs and dosages. While men metabolize caffeine more quickly, for example, women are known to metabolize certain antibiotics and anxiety medications more rapidly. This means some drugs could work less effectively depending on the patient’s sex, but in some cases, it also means women are more at risk than men for adverse—even lethal—side effects.29 Hormonal changes in women may put them at more risk of side effects at certain points in their menstrual cycles than others.
This kind of information is extremely valuable to patients and physicians alike, especially the millions of women living in chronic pain, who may already experience changes in the severity of their symptoms and disease due to hormonal fluctuations. In a critical review of pain research published in the Journal of Pain in 2009, researchers found that “abundant evidence from recent epidemiologic studies clearly demonstrates that women are at substantially greater risk for many clinical pain conditions, and there is some suggestion that postoperative and procedural pain may be more severe among women than men … current human findings regarding sex differences in experimental pain indicate greater pain sensitivity among females compared with males for most pain modalities …”30
Those invested in pain and sex differences say that sex matters from “womb to tomb” and that includes how we treat pain—and how medications such as painkillers and anti-inflammatories work in our bodies.
“Just consider all the differences between men and women. At every level of the human body—the system, organ, tissue, cellular, and sub-cellular—there are a host of differences between sexes. Only recently have we started to understand how these differences impact the prevention, diagnosis, and treatment of disease. This underscores why physicians must have the freedom to prescribe the treatments best suited to the particular patient for whom they’re caring,”31 wrote Phyllis Greenberger, president and CEO of the Society for Women’s Health Research, in a 2009 opinion piece in the Boston Globe. While the NIH Revitalization Act and similar guidelines developed by the FDA paved the way for the inclusion of women and minorities in clinical research, this has not yet translated into the type of analysis and information women need.
When I spoke with Greenberger, she said that the FDA knows there are differences between the sexes that matter and that while companies are required to include women in their studies, it just isn’t being done on the scale it needs to be.
“There [are] lots of problems in terms of liability for certain conditions, and for the most part while the companies are required by regulations from the FDA to include women and minorities in clinical trials and they are supposed to be doing sex analysis, that part either doesn’t get done or it doesn’t make the label,” she says. Some physicians know there are certain drugs within a class that may be more effective in men than in women, such as the SSRIs [selective serotonin reuptake inhibitors] that are used for depression. Greenberger points out that those medications don’t have any labeling that gives instructions to women aside from a pregnancy label, which is the only thing that differentiates men from women on the label.
“The awareness is certainly there and the FDA and Office of Women’s Health are pretty good about this and the inclusion is there in some cases, but the analysis and the transference to the labels just isn’t there. There just aren’t enough women in the studies for a statistically significant analysis of whether there are differences,” she says.
Based on her experiences working with patients in pain of both genders, Dr. Whitman offers five specific steps she thinks can help society move forward when it comes to treating women in pain: improved education about pain in general; educating ourselves about our own medical conditions and treatment options; seeking a second or alternative opinion and questioning doctors; supporting organizations that seek to educate the public about pain or that support research in pain diseases; and advocating for increased research spending by the National Institutes of Health. She makes this last suggestion with good reason: while chronic pain is as prevalent as cancer, cardiovascular disease, and diabetes combined, the NIH spends 96 percent less on research on chronic pain than on these conditions.32
We’ve seen some progress. In 2011, the United States Senate called for an expanded and better-coordinated research effort for several pain conditions, including chronic fatigue syndrome, fibromyalgia, and endometriosis, and under the auspices of the Affordable Care Act, the NIH asked the Institute of Medicine to address the public health impact of chronic pain and come up with specific recommendations to improve how we research, treat, and understand pain. Approaching this report from a public health perspective inherently validates pain as a widespread, serious health issue.
Not coincidentally, many of the common-sense recommendations echo what the specialists who work with patients in chronic pain endorse. Among other things, the IOM report calls for the acceleration of data collection on pain incidence, prevalence, and treatments to better assess risk populations and trends over time. It highlights the need for better pain treatment that is tailored for the individual patient, treatment that relies on the self-management of pain by the patient, and treatment that includes collaboration between primary care physicians and pain specialists. It also recommends expanded education projects for patients, providers, and the general public that cover the “complex biological and psychosocial aspects to pain,” including formalized undergraduate and graduate training programs.33 The IOM acknowledged the strides made in understanding the “biological, cognitive, and psychological underpinnings of pain” and concluded that “the future promises advances in a number of fields—from genomic and cellular through behavioral mechanisms.”34 Still, the report points to gaps in research, particularly in terms of effective treatments, as well as in the funding, selection, and oversight of clinical trials. The report urges that these suggestions and problems be addressed and strategies be implemented by 2015. Time will tell how effective and influential this “blueprint for action” is in the treatment and comprehensive research of pain, but it is a start, and it opens up a more comprehensive view of pain as a multifactorial disease, not merely a symptom to treat.
As for whether news coverage of the fibromyalgia debate meant we reverted to the “dark ages” of pain and prejudice, the implications of past assumptions figures in the controversy. Female patients today are very conscious of the stereotype of the hysterical patient, so deeply ingrained is it that it has become the characterization these patients fear most. Fibromyalgia and its other chronic pain counterparts are not psychosomatic expressions of social malaise but physical manifestations that have extreme consequences for the social development of the patient. Recognizing their social dimensions—the way we communicate, the expectations we hold for ourselves, the irrepressible temptation to think youth equates health, for example—allows for progress, physical and emotional.
The final element is the true biology of pain, but as we’ve seen, to say the answer lies in sourcing the physical origin of the many conditions that cause pain is just one facet of unshrouding the mystery. In The Pain Chronicles, Thernstrom discusses a newer paradigm of pain, a contemporary model that “sees it as a complex interaction among parts of the brain … it has also revealed the truth embedded in the nonscientific, premodern model by showing the way in which pain is inherently meaningful because it is not simply a matter of nerves firing, but an experience created by meaning-making parts of the brain.”35
Sontag’s description of that “night-side of life,” wherein the sick dwell and which the healthy avoid, is especially fitting when it comes to those suffering from chronic pain. Brain, body, heart, mind—severe and ongoing pain encompasses every aspect of a patient’s being, fills in so many crevices of his or her life, until it threatens to absorb them entirely. Since the development, experience, and perception of pain are influenced by a variety of factors, we should expect no less comprehensive an approach toward researching and potentially treating it. Science holds the power to at least partially demystify pain, but only if viewed within the context of the societal norms that shape the individual patient’s world.