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.
Toward an Answer: Pain in the Twenty-First Century
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.
Chapter 7
Into the Fray
Patients in the Digital Age
For Jennifer Crystal, a thirty-three-year-old woman living with Lyme disease and two of its co-infections, life changed dramatically with one tiny tick bite in the summer of 1997. It was the summer before her sophomore year at Middlebury College, and Crystal was working at a summer camp in Maine.
“I remember the day that everything changed, that summer at camp: I came into the dining hall after a long morning of lifeguarding, driving a ski boat, and chasing campers around in the sun. Suddenly the room started to spin. I got dizzy and shaky, and my hands were clammy. Everything seemed very far away, as if I were looking through a tunnel. The camp nurses immediately suspected dehydration, but when they heard how well I had in fact been hydrating all day, they realized I was having a low blood sugar reaction. That episode was the first of many, and soon I had a diagnosis of hypoglycemia. I’d never heard of it. It didn’t make sense to me, or to any doctors, why I would suddenly develop hypoglycemia, but no one seemed overly concerned with finding the answer,” she says.
It would be years before Crystal and her doctors would trace her symptoms back to that summer and to a tick bite, but as it turns out, that is not at all unusual when it comes to Lyme disease. The controversy surrounding the diagnosis of chronic Lyme disease and the schism it has caused between patients who say they have it and factions of the medical establishment who disagree with the diagnosis, symptoms, and treatment for it represents what is now a well-established pattern when it comes to chronic illness. In an article published in 1991, when Lyme disease was on the rise in terms of notoriety and diagnosis, physician and medical historian Robert Aronowitz wrote that “A market for somatic labels exists in the large pool of ‘stressed-out’ or somaticizing patients who seek to disguise an emotional complaint or to ‘upgrade’ their diagnosis from a nebulous one to a legitimate disease.”1 Aronowitz went on to write, “When one is not sure whether a patient has ‘disease,’ then both doctor and patient have room to speculate about the way in which life stress or other emotional problems may be expressed in bodily symptoms.”2 In some ways, this same fo
rmula can be applied to a host of readily identifiable chronic conditions in a familiar, rinse-lather-and-repeat pattern: patients report symptoms that are hard to explain, and a space opens up for questions and skepticism. The tempting answer is to let science clear up the confusion, since, unlike many of its contemporary illnesses, there is quantifiable evidence of Lyme disease.
Except when there isn’t.
As an infectious disease, Lyme is more common than HIV/AIDS, and, in its own right, is as politically mired. It is the most common vector-borne illness in the country, meaning it is transmitted through a bite, and between 1992 and 2006, reported cases of Lyme disease more than doubled, topping at almost 250,000.3 According to some estimates, up to 20,000 new cases are reported annually,4 though some patients and physicians feel the numbers are actually much higher, since Lyme is often mistaken for diseases like chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, and so on. Its politics, its patient advocacy community (which adapted quickly to the social media milieu), and its challenge to evidence-based medicine all make chronic Lyme disease a revealing portrait in present-day illness. Along with hotly debated topics like the association between autism and vaccines, these medical dramas have played out online in real time for much of the past decade, comments and postings often complementing or replacing altogether the protests of decades past. We saw in the last chapter how much science has the potential to bring understanding of the causes and treatments for chronic pain disorders. In the case of chronic Lyme and other chronic conditions, it isn’t so much that the research is just emerging. Instead, often the research exists, but it is the strength of the science itself that is at issue—and technology helps fuel criticism and analysis, for better or worse.
In the Kingdom of the Sick: A Social History of Chronic Illness in America Page 15