In 2003, a medical researcher in Madison, Wisconsin, who writes under the screenname Sasha_Feather began experiencing debilitating facial pain that resisted treatment. First, a dentist incorrectly diagnosed her with temporomandibular joint dysfunction; next, a neurologist told her she was going through something “atypical.” Her referral to a pain clinic from her primary care physician only came with much battling, as is often the case with women in her situation. She eventually received a diagnosis of rheumatoid arthritis after the onset of new symptoms in 2012. It is unclear to her whether this condition has anything to do with her facial pain.
Sasha_Feather is one of the estimated 100 million adults in the United States who live with chronic pain. Most of these people are women—even so, the dialogue surrounding chronic pain is gendered, forcing women to surmount multiple obstacles to get the care and attention they need. Physicians frequently dismiss women who report chronic pain or write them off as experiencing emotional hysteria, unlike their male counterparts. In turn, public perceptions of these women reflect this this derision. Until the sexism inherent in the social and medical response to chronic pain is addressed, women won’t be able to access the treatments they need.
Many conditions can cause chronic pain. The adults experiencing it may be dealing with disorders like Sasha_Feather’s own rheumatoid arthritis, multiple sclerosis (MS), or fibromyalgia. Others have what used to be known as chronic fatigue syndrome (CFS)—now called systemic exertion intolerance disorder (SEID)—which tends to affect women more than men. Notably, CFS was a highly controversial diagnosis in past years, derided as “yuppie flu” and regarded as highly suspect by members of the public. This week’s decision by the Institute of Medicine to identify it as a consistent and very real medical condition is a sharp rejoinder to claims that women are faking or making up symptoms for attention.
Study after study has shown that doctors are more likely to request tests for men with chronic pain and treat their symptoms as a physical and neurological condition; physicians treat similar symptoms in women as a psychological or psychosocial issue, asking patients about factors like stress and their situations at home. Medical providers refer women to therapists rather than pain clinics, or tell them they’re exaggerating their experiences and refuse entirely to offer support and treatment. This happens whether women are reporting to emergency rooms, considering surgery for joint conditions, requesting referrals to pain clinics, or discussing troubling problems that might point to pain disorders. And for patients, this results in long delays in diagnosis and treatment, and weeks or even months of poorly managed pain.
In an op-ed on the subject for the New York Times, writer Laurie Edwards described the effect medical providers’ preconceptions of her had on her treatment:
[D]octors lobbed questions at me: Why wasn’t I responding to the medication the way they expected I would? Was I just too anxious? Could I not handle stress, and was that making me sick? I was 23 before I was given a correct diagnosis of a rare genetic lung disease called primary ciliary dyskinesia. I’d been sick since birth, but long diagnostic journeys are occupational hazards of living with conditions doctors don’t often see. Still, my journey was unnecessarily protracted by my doctors’ dismissal of my symptoms as those of a neurotic young woman.
Sasha_Feather told Rewire that she, too, has faced disbelief on social and medical fronts, including the common attitude that women who complain about pain are exaggerating for attention. (She asked that we not use her real name.) “I feel like I am expected by society to ‘tough it out’ and work through my pain, and intellectually I know this is wrong but I feel it anyway,” she said. “Doctors do seem to expect the patient to manage their pain and take responsibility for it, instead of trying to ease their pain and showing sympathy toward the patient.”
There’s also the gendered and racialized belief that people complaining of such symptoms are drug-seekers—women, particularly Black women, are turned away from doctors or aggressively grilled when they complain of chronic pain because medical professionals suspect drug addiction. “I have an ongoing, nagging fear that I’ll be ‘cut off’ from pain meds that I’ve been taking for six-plus years,” said Anna, a government worker, who spoke with Rewire about her experiences with fibromyalgia. (Anna requested that we not use her last name.) “Pain meds are, to me, a tool: Many, many people in pain use them correctly and not as an escape or to get ‘high,’ which I think tends to get pushed aside in debates or discussions about drug addiction and diverted drugs.”
The beliefs that symptoms are hyperbolized, “all in her head,” or self-treatable are significant contributors to poor access to care. Women are less likely to receive narcotic medications and other strong pain management tools when they report issues like post-surgical pain, and this extends even to girls—one study showed that after surgery, boys were more likely to be given codeine, while girls received acetaminophen. Meanwhile, health-care professionals give women sedatives to manage pain, while men receive more appropriate medications. Such undertreatment of acute pain reflects the larger problems with the approach to chronic conditions. Disturbingly, physical appearance can even play a role in access to treatment, with more attractive women receiving better care.
The most effective way to address pain, according to physicians who specialize in the discipline, is to provide consistent treatment before the patient experiences the abrupt spikes of “breakthrough pain.” These sudden bursts can be emotionally stressful in addition to physically trying, interrupting the ability to work and perform tasks of daily living. By keeping pain levels manageable and ideally low, with measures that can include pharmacological options as well as physical therapy and other modalities, the effects of chronic pain can be greatly reduced. Unfortunately, women often don’t receive treatment that allows them to control their conditions with these principles in mind.
Pain spikes aren’t just unpleasant. Poorly managed pain can slow surgical recovery times, increase the risk of depression, and cause other medical complications. Long-lasting untreated symptoms can be grueling and unendurable. That has serious implications for women patients, and not just the obvious one—that they are left dealing with a persistent and debilitating medical condition that interferes with their quality of life, ability to work, and pleasure in socialization and activities. Chronic pain actually creates lasting changes to the brain and nervous system if it is not treated appropriately, shrinking the brain and changing the pathways of some neurological processes. Once these changes occur, they can’t be reversed, which is why adequate pain control is so important.
Mistreatment of chronic pain is only one of the medical discriminations women experience as a consequence of the sexist attitudes that dominate American culture. But given how how widespread the condition is, and how devastating its effects can be, it’s one of the more acute medical issues facing women in the United States. Any woman can develop chronic pain at any point in her life—it tends to be more common in older adults, but both Anna and Sasha_Feather started experiencing symptoms in their 20s—and it can manifest in a variety of ways.
Developing better approaches to chronic pain in women requires a two-pronged approach in the medical community. Researchers need to specifically focus on pain in women, including studying female subjects to learn more about how the issue interacts with women physically and neurologically. Such studies also need to include investigations on medications and other management tools for chronic pain to differentiate what works most effectively on various genders—and the issue of transgender men and women must be considered as well, to determine how genetics, hormones, and other factors interact.
With that in mind, women’s medical advocates and rights groups need to start calling for an end to the very real pain women are experiencing across the nation. That should also include demands for better education for physicians about medical discrimination, unconscious bias, and the provision of complete care for women with chronic pain. Disparate treatment on the basis of appearance, gender, race, and other factors creates gross inequalities in the medical system. Second-generation pain management tools are also critical, as many of the pharmacological interventions used today date back centuries, with opiates and related opioids still being the first line of treatment for patients with pain disorders.
Chronic pain will always be a complicated condition to manage, but it doesn’t have to be a sentence to lifelong misery.