Brenda van Hoose has been in pain for 30 years. Her current diagnoses include spinal stenosis, arthropathy, bulging discs, arthritis, a pinched nerve, and fibromyalgia.
Most of the discomfort is focused on her right shoulder and down her left leg, which makes lying on either side difficult. She can’t sleep without a sleeping pill, and then it takes her about half the day to fully wake up.
Van Hoose, who lives outside of Houston with her husband, has tried surgery, bought expensive contraptions like inversion tables and bath spa units, and, more recently, received steroid injections that seemed to help for a while. Still, on a scale of 1 to 10, her daily pain level hovers between 6 and 10, she says.
It is so debilitating and unpredictable that she can’t work outside the home, and she has a hard time keeping up with housework since activities like vacuuming and cleaning the bathtub can be excruciating. Most of her work has been as a waitress, and her last full-time job was at a shelter for troubled teens, in 2002, when her pain levels made work intolerable. Since then she has done some direct sales (mostly Tupperware) but nothing else. “I’m just stuck here with my pain, all day, every day,” she said. “It gets old.”
There is a general arc that makes up the familiar modern narrative about the serious disease: A person comes down with an illness at a particular moment in time. They suffer. They are diagnosed. They undergo medical treatment. And eventually, they either recover or they die. Stories like this are tidy and satisfying, even when the ending is sad. They at least offer a resolution.
When you talk to people with chronic pain, however, their stories usually sound nothing like this. There is often no distinct moment of onset and no definitive diagnosis. Medical treatment is sporadic, uneven, and inadequate. Patients don’t recover, and they don’t die. Instead, they simply suffer — often for decades.
“Chronic pain” is a catchall term that encompasses a wide variety of conditions.
Definitions vary slightly, but the National Institutes of Health describes it as pain that lasts for more than three months. Chronic pain includes problems like headaches and backaches, as well as conditions like fibromyalgia, vulvodynia, and endometriosis.
A 2010 estimate by the Campaign to End Chronic Pain in Women, a two-year project led by a coalition of pain-focused nonprofits, found that just six major conditions, including endometriosis and chronic fatigue syndrome, cost Americans up to $80 billion annually, thanks to issues like incorrect diagnoses and fruitless treatments. Overall, chronic pain affects more people than cancer, diabetes, and heart disease combined.
Of course, plenty of diseases have no known cure. But there are at least two distinct aspects of chronic pain that make it different from heart disease or cancer. First, pain is subjective by definition: The only reliable way to measure it is simply by asking patients how they feel. There are few biological indicators, and no blood tests or body scans that can measure pain in a concrete way.
In fact, many chronic pain patients, including those suffering from pain with an ostensibly discrete physical location like the back, are frustrated when X-rays and other scans turn up no physical evidence of their symptoms. (Preliminary fMRI research may help identify pain markers in the brain, but more on that later.)
Pain’s subjectivity can make it suspicious both to people who don’t suffer from it and to the traditional medical establishment, which prefers objective clinical measures of illness. “The stigma about people living with pain has always been there,” said Penney Cowan, CEO of the American Chronic Pain Association, a national support organization she founded in 1980, after years of living with fibromyalgia. “There’s skepticism because pain is invisible.”
The second differentiating factor
Is that women are significantly likelier than men to suffer from chronic pain. Some types of chronic pain, like vulvodynia, are specific to the female body; others, like endometriosis, occur only very rarely in men.
Other problems simply surface more frequently in women for reasons that researchers have yet to fully understand. Fibromyalgia is nine times more common in women, for example, and so is the group of jaw-pain conditions known as TMJ. Women are three times as likely to suffer from autoimmune disorders, which are often accompanied by serious ongoing pain.
Theories include hormonal differences, and that women are simply more comfortable talking about their pain. But the bottom line is that in many ways, chronic pain is a women’s issue.
Those two factors contribute to a hard truth about chronic pain: Despite the fact that more than 100 million Americans suffer from it, it is still not studied enough and is underfunded and undertreated. Why has such a significant public health issue gone practically ignored for so long?
A Classic Gender Bias
Researchers still don’t understand all the reasons women suffer from chronic pain at higher rates than men. Women also seem to experience pain, in general, more acutely. In lab experiments in which researchers subject people to extreme heat and cold, for example, women seem to exhibit lower tolerance for pain than men do.
Although broader research into sex differences in pain is taking place, it is still a relatively young field of study. Until the 1990s, many medical studies did not include women at all, under the faulty assumption that male and female bodies processed drugs the exact same way.
It’s a cruel reality that women are also taken less seriously when they report their pain. For example, a 2008 study found that female emergency room patients complaining of pain were up to 25 percent less likely to receive opioid medication than men were — and the women also waited longer to receive that medication.
As Diane Hoffmann and Anita Tarzian summed it up in their influential 2001 Journal of Law, Medicine & Ethics article “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,” “Women are more likely to seek treatment for chronic pain, but are also more likely to be inadequately treated by health care providers, who, at least initially, discount women’s verbal pain reports.”
“Women need to be seen as reliable narrators of their pain,” said Laurie Edwards, the author of the 2013 book In the Kingdom of the Sick: A Social History of Chronic Illness in America, who has suffered pain from a rare genetic lung disease. “Unfortunately, there’s still some carry-over of this idea of women as weaker, or more hysterical. So when they talk about being in pain, they’re not always taken as seriously.”
A study from the 1980s found that female chronic pain patients were more likely than male patients to be diagnosed with “histrionic disorder” — defined by “excessive” emotion and attention-seeking. (It’s not just an issue in pain treatment: Another study, this one from 2009, found that women with symptoms of heart problems were twice as likely to be diagnosed with a mental health issue than men were.)
Today, many chronic pain sufferers still lament that their pain is dismissed as being “all in the head.” But one tricky aspect of the problem is that pain is mental: Even when the cause is as clear as a hammer smashing a finger, the pain itself comes from the brain processing that event. And there are strong cultural and psychological elements to how different groups of people — and different individuals — experience pain.