Pain in Women: Hysteria or Misjudgment?

Maya Dusenbery examines the reasons behind clinical research gaps among men and women and digs into the assumptions made by healthcare providers when a woman enters their office.

 

In DOING HARM: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, author Maya Dusenbery provides a historical perspective on the way pain in women has been assessed, diagnosed, and judged. From severe menstrual cramps and migraines, to fibromyalgia and chronic fatigue syndrome, this book is a must-read for female chronic pain warriors and the physicians who treat them. Dusenbery examines the reasons behind clinical research gaps among men and women and digs into the assumptions made by healthcare providers when a woman enters their office—all while providing concrete examples of women who have fought against the stigma.

Below is an adapted excerpt from the section titled “Neglected Diseases: The Disorders Formerly Known as Hysteria.” Copyright © 2018 by Maya Dusenbery. Published by HarperOne, an imprint of HarperCollins Publishers. The book is available on Amazon and wherever books are sold. 

EXPLAINING THE INEXPLICABLE

The most frustrating thing is that, until recently, women’s efforts at being the perfect female pain patients—not too hysterical, but not too stoic; not too put together, but not too disarranged—were pretty much destined to fail for those with functional pain conditions. Functional pain conditions may include irritable bowel syndrome (IBS), temporomandibular joint disorder (TMD), chronic tension-type headache, idiopathic low back pain, vulvodynia, interstitial cystitis (IC), and fibromyalgia, for example. At best, they may have found a doctor who believed the pain was real but had no explanation for it or understanding of how to treat it. At worst, their pain would be deemed psychogenic or fabricated by default. What chronic pain patients needed was not advice on how to better communicate their symptoms, nor even individual doctors more willing to trust their accounts. Ultimately, they needed scientific research to explain the inexplicable.

Instead, the most notable thing about research on chronic pain disorders, especially functional and poorly understood pain disorders that largely affect women, is how little of it there’s been. Even today, chronic pain conditions are grossly underfunded, relative to how many people are affected by them, how disabling they can be, and how much knowledge we lack about how to treat them. According to an estimate by the Chronic Pain Research Alliance (CPRA), vulvodynia, TMD, IC, fibromyalgia, endometriosis, IBS, chronic tension-type headache, chronic migraine, chronic low back pain, and chronic fatigue syndrome/myalgic encephalomyelitis research received $110 million total from the National Institutes of Health (NIH) in 2014, an average investment of just $1.06 per affected patient. By comparison, it spends about $35 on each person with diabetes.

Meanwhile, as with any “medically unexplained symptoms,” much of the research that has been done on chronic pain has been focused on uncovering the psychological factors and personality traits that were assumed to cause it. Higher rates of depression and anxiety among chronic pain patients have been pointed to in order to suggest that mood disorders somehow cause the pain—which, given the nature of pain, is an especially ridiculous case of mistaking the consequences of illness for the cause.

Perhaps most unfairly, “unresponsiveness” to treatment has been seen as a red flag that pain was not organic but instead maintained by some unconscious hidden motive on the patient’s part. And to add insult to injury, patients’ understandable frustration with inadequate treatment has also fed into psychogenic theories. Studies have found high levels of “hostility” among chronic pain patients, another fairly unsurprising finding that was just added to the pile of evidence against them.

In the 1990s and 2000s, thanks to new advanced imaging technologies, chronic pain patients finally got some corroborating evidence of their reports. Functional MRIs and PET scans allowed researchers to observe, via measurements of blood flow, which particular structures of the brain are activated when a person is experiencing pain. Though pain may still be subjective in the exam room, in the lab, it’s increasingly something that can be seen, if indirectly.

Over the last few decades, research has further suggested that abnormalities that lead to an amplification of pain within the central nervous system may contribute to many “unexplained” functional pain conditions. Dr. Daniel Clauw, director of the Chronic Pain and Fatigue Research Center at the University of Michigan, offers this analogy to explain this kind of “centralized” pain: Imagine your body is an electric guitar and its strings are your sensory nerves. The guitar is constantly getting played, but if the amp is set at the optimal level, you have to strum a string really hard to create a sound (sensation) that’s unpleasantly loud (painful). In centralized pain, however, it’s as if the amp is turned all the way up: the strings are getting played as normal, but suddenly everything sounds too loud. In this state, sensations that would normally just feel like a touch—a gentle brush of the skin—now provoke pain (this is called allodynia), while those that would usually only be mildly painful now feel excruciating (hyperalgesia).

In studies in which patients are poked and prodded to measure pain sensitivity, patients with functional pain conditions show widespread hyperalgesia and allodynia compared to healthy controls. And functional imaging studies confirm that the pain-processing areas of the brain light up in these patients in response to stimuli that would typically not be experienced as painful. They also seem to share other abnormalities in common: dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, autonomic nervous system and immune system abnormalities, and even changes in the volume of gray and white matter in various parts of the brain.

The progress made in explaining unexplained pain is shifting our understanding of all chronic pain. Even chronic pain conditions in which there is nociceptive (ie, pain caused by stimulation of the nerve cells) and inflammatory pain can involve centralized pain, which helps explain why the degree of tissue damage in these conditions does not correlate very well with patients’ reports of their pain. For example, 30 to 40 percent of people who, according to their X-rays, have severe knee osteoarthritis don’t have any pain, while 10 to 15 percent of people without evidence of OA have painful joints. Approximately 20 to 30 percent of people with autoimmune diseases like rheumatoid arthritis or lupus also meet the criteria for fibromyalgia; it’s as if centralized pain is overlaid on top of their nociceptive and inflammatory pain.

The long shadow of hysteria has also hindered scientific progress on understanding why many people develop multiple pain conditions. As far back as the 1980s and 1990s, small studies were showing a large degree of overlap between functional pain disorders; patients with one were more likely than the rest of the population to go on to develop another or several others. But at that time, since each individual disorder was suspected of being psychogenic, these comorbidities were just further cause for dismissal. After all, the more “medically unexplained symptoms” someone had, the more likely she’d be seen as hysterical—the symptoms assumed to be “all in her head.”

The thing is, exactly such a history may well be the rule rather than the exception. In the last decade, larger studies have suggested that “there actually are more people that go on to have multiple conditions than there are that just end up with one primary disorder,” says Chris Veasley, director of the CPRA. And the more conditions, the worse the outcome. “As the number of conditions you have increases, the less likely you are to benefit from treatment, the higher the likelihood of disability, increased costs, mood disorders,” Veasley says. And even today, with “multiple conditions that have long been thought of as psychological, the level of stigma that’s attached to these patients is even greater.”

Studying why this overlap occurs has become a major area of research focus. One of the key open questions: to what extent the development of such “chronic overlapping pain conditions”—as the NIH has dubbed them—reflects a progression that could be derailed. Since about half of the risk for developing centralized pain disorders appears to be due to genetic susceptibility, it’s possible that some people would eventually develop multiple pain disorders no matter what, their central nervous systems being destined to tip into dysfunction. But for some, Veasley says, if the first pain condition had been treated better—“if we were able to intervene early and stop the cascade of centralizing”—perhaps the development of additional disorders could have been avoided.

In other words, how many cases of so-called hysteria could have been prevented if women’s unexplained pain was taken seriously from the start?

About the Author:

Maya Dusenbery is a journalist, editor of Feministing.com, and author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Updated on: 06/07/18
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