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 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 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.
“It does everyone a disservice to ignore that there are psychological components to chronic pain,” Edwards said. Stress, depression, and anxiety, to name a few examples, all have physiological manifestations that can exacerbate illness. Doctors need to take a holistic approach to pain without dismissing it as merely in the mind. Waving off chronic pain as “only stress” is not a solution.
Another sad truth is that chronic pain can be socially isolating, which doesn’t help with stress and depression. Michelle Living, who has endured severe back pain and vulvodynia — chronic pain in the vulva that has no known cause — since 2002, says that her pain has slowly winnowed down her relationships. “It weeded out the people in my life who were fair-weather friends,” she said. “I was left with a few super-solid friends who stuck by my side. … Now, making friends, I would say I’m more careful.”
Michelle Living, who lives in Alberta, Canada, married in 2004. Back then, she had no idea that pain would continue to dominate her life indefinitely. “The first years of marriage are hard for anyone,” she said, “but I’d venture to say it was harder for us.” She had to quit her job as an aesthetician, and admits that “you’re just not fun anymore” when pain dominates your life.
Susan Spadone, who lives in New Jersey, has seen chronic pain affect her marriage and relationships, too. She injured her back 19 years ago lifting a heavy box at work, and has spent the years since trying to alleviate her pain with series of surgeries, intense physical therapy, aquatherapy, Reiki, yoga, and acupuncture. She had been married for less than three years at the time of her injury.
“Think about the strain this puts on a marriage,” she said, adding that her husband “just didn’t know how to help me. I was not the person he married. He didn’t sign up for this.” Spadone says that most of her doctors said, “Are you crazy?” when she asked about having children, so she and her husband never tried. “Somehow we are still, miraculously, together,” she added. But “the majority of people in my life when I had my injury are not in my life anymore, and I can’t blame them.” She finds solace today in her dog, and has been working to launch a new career as a life coach. “I spent so much time and energy trying to get back to who I was,” she said “but you have to look forward.”
The problem becomes more complicated for women suffering from maladies whose mere existence medical professionals cannot agree on. Fibromyalgia and chronic fatigue syndrome are among the conditions that are especially poorly understood and still have no agreed-upon biological markers to confirm a diagnosis.
Recent research has made inroads, however. Scientists have theorized that central nervous system dysfunction, genetic factors, and environmental issues (such as exposure to certain chemicals) — among other things — may all be playing a role. But in the meantime, the stigma remains.
Hope For Treatment, But Still No Cure
Despite all the grim news, chronic pain is starting to receive more serious attention. The issue is attracting more research from scholars, more awareness from the general public, and more attention from government. In April, the National Institutes of Health released a draft of a document called the National Pain Strategy, which is intended to kick-start a “comprehensive, population health-level strategy for pain prevention, treatment, management, education, reimbursement, and research that includes specific goals, actions, time frames, and resources.” (Public comments closed on May 20.)
Still, when you talk to experts in chronic pain, you don’t hear much talk about finding a cure. “You can’t just say, ‘Let’s fix pain,’ because so many different things cause pain,” Edwards said. “We can say, ‘We want to look for the genetic mutation for X disease, we want to cure X type of cancer,’ whatever the case may be. But pain isn’t viewed from a curative standpoint.”
Instead, conversations about pain tend to include more modest words like “treatment” and “management.” That’s in part because chronic pain is not a discrete disease, but a complex web of overlapping conditions, with an equally complex web of causes and accelerators. “There’s no panacea,” says Cowan, who is CEO of the American Chronic Pain Association. “So many people are looking for that one magical thing to help them better manage their pain.”
She compares a person in pain to a car with four flat tires: Finding the right medication may fix one tire, but the person may require treatments like counseling, acupuncture, and stress management to inflate all four. She successfully treated her pain in the late 1970s with a multidisciplinary pain-management program, an approach that typically combines approaches like occupational therapy, psychological care, and nutritional counseling. Over the following decades, however, she watched the treatment consensus shift to procedures like nerve blocks, and then to opioids. The number of multidisciplinary programs has plummeted.
That frustrates some doctors who work with patients in pain. “Medicine is focused on treating symptoms, not the actual root cause,” said Dr. David Hanscom, a Seattle spine surgeon who works with patients on managing factors that contribute to pain, like stress and anxiety. Some popular types of spinal surgery, he says, have a greater chance of increasing pain than they do of solving it. “You cannot treat these people in isolation,” he said. “That’s the exact opposite of what medicine is supposed to be.”
Some recent research is working to find physical evidence of pain by using functional magnetic resonance imaging, or fMRI technology — brain scans. Tor Wager, an associate professor of psychology and neuroscience at the University of Colorado Boulder, led a studypublished in January in which volunteers’ arms were subjected to intense heat while their brains were being scanned. Wager found that pain operates in the brain in two different ways: There was an immediate response to physical pain, and a separate response when he asked subjects to rethink their pain in various ways.
Wager is hopeful that research like his will help medical professionals learn “how to stop blaming the person.” Just because a doctor can’t find a clear source of pain in, say, a patient’s back doesn’t mean the patient’s pain isn’t real. In fact, it could simply be a type of pain that responds better to something like cognitive-behavioral therapy than to yet another drug. “We spend billions of dollars a year focused on the discovery of drugs that work on the periphery — in the back, or in the skin [for example],” he said. “But those drugs are only going to be successful in a certain subset of patients.”
Meanwhile, chronic pain patients do their best to find the relief they can. Brenda Van Hoose finds occasional relief through massages, and takes vitamin B in the morning to boost her energy. “There’s no time that I’m not in pain,” she said with a sigh of resignation. “I don’t see myself pain-free unless the almighty God heals me. … It’s a matter of managing it, and I’m doing pretty well right now.”
by Ruth Graham for mindbodygreen.com