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 fi
ll 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.
In the Kingdom of the Sick: A Social History of Chronic Illness in America Page 14