A World of Hurt
Amid widespread medical confusion surrounding chronic pain, Pam Ressler is using the web to relieve the isolation of its sufferers
Pamela Ressler was a nurse at Boston-area hospitals for about 20 years before she encountered pain in a serious way. As she says, “Pain was a background issue or a side issue in my R.N. years. Pain was just a symptom to be treated.” That was before her life, and her understanding of pain, took a dramatic turn.
Ressler’s son, Nick, who was diagnosed with ulcerative colitis at age 3, entered a hospital for emergency treatment for pancreatitis during his middle-school years. He was in terrible pain, typical for the condition, she says. Before long, Nick developed bile duct cancer, and he was transferred to Massachusetts General Hospital—by many measures, one of the nation’s finest. Nick’s pain never relented, despite anything and everything that modern medicine could bring to bear. The failure left Ressler baffled and dismayed. “I couldn’t believe it,” she recalls. “Here we have the best care in the world, and he’s still in tremendous pain.”
A feeling of acute isolation was one consequence of the sensory damage. As author Melanie Thernstrom points out in her revelatory best-selling 2010 book The Pain Chronicles, which describes her decade-long hunt among specialists for relief from a shoulder injury, “To be in physical pain is to find yourself in a different realm—a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes.”
There was a lot of pain and a lot of crying in Nick’s hospital room. When Nick told his mom and dad that he just wanted to be a kid again, they realized some of what he had lost to his illness. They promptly brought him his two favorite guitars from home, as well as a laptop. Nick played his guitar for the residents, and eagerly logged onto the web to chat with friends back home. “He’d be on with his friends, and there wouldn’t be any pain,” says Ressler. “He could be Nick again.”
Her son died in April 2001 at age 14. That experience in the hospital transformed Ressler. She continued working as a nurse for several more years before deciding, at age 48, to enter the Pain Research, Education and Policy Program (PREP) at Tufts—a one-of-a-kind multidisciplinary master’s degree designed for health professionals. Ressler was determined to learn more about two concerns that nagged at her in the weeks and months following her son’s death.
Why had doctors been unable to treat her son’s pain adequately in his final days? And how might the simple things that she had seen restore her son’s quality of life–such as having the lifeline of a computer near at hand–be applied to a wider community?
Back to the Source
The history of pain must be seen through a cultural filter. It’s a complicated picture, to say the least, more like a braided rope than a clothesline. At every point since Creation, a physician’s way of thinking about pain, and by extension the average patient’s experience of pain, has been orchestrated by the belief system that frames its occurrence.
By many religious accounts, pain began in the Garden of Eden. Adam bit the forbidden apple, and the headaches for everyone began right there. As we all know, women were condemned by God to suffer in childbirth as one consequence of the Fall, but that was just the start. “Thorns also and thistles shall [the ground] bring forth to thee,” God tells Adam after his grave transgression. Those were the truly dark days of pain, once the fig leaves came off.
Over time, as civilization has developed far enough to include iPods and cappuccinos among its amenities, the meaning—which is to say the human interpretation—of pain has changed dramatically. But in the ancient world, pain was always something more than mere bodily injury. It was seen as a signifier, a judgment delivered from above that reflected fair punishment for the soul’s demerits.
“I couldn’t believe it,” she recalls. “Here we have the best care in the world, and he’s still in tremendous pain.”
Pain and the spirit were always closely linked, and sometimes for good, according to the prevailing view. Pilgrims and ascetics struggled to get nearer to God by enduring painful rites of all kinds. Martyrs sought out painful deaths—the more painful, the better. A deep belief in the spiritual properties of pain led to its regular use in jurisprudence in the pre-modern world, not only for punishment but also for determining the guilt or innocence of a suspect. This system was known as “trial by ordeal.” Suspects would be forced to walk on burning coals or to plunge their hands into a pot of boiling water. If God failed to protect them from pain, they were guilty.
The arrival of anesthesia in the mid-19th century threw a wrench into the conventional understanding of pain by removing its necessity. Many Christian churches objected to the use of the new anesthetic approach on the grounds that it contradicted God’s commandment to Eve concerning the pain of childbirth. Doctors lent their voices to the resistance, arguing that pain was conducive to healing. “Pain during operations is, in the majority of cases, even desirable; its prevention or annihilation is, for the most part, hazardous to the patient,” wrote a British physician. Eliminating pain was seen as tinkering with the natural order.
Nevertheless, by the end of the Victorian era the game had changed irreversibly. Pain no longer held any meaning in medical practice—or if it did, that meaning was greatly subdued. Instead, doctors in the early 20th century overwhelmingly began to view pain in simple physiological terms, as a biological symptom of disease that could be, and should be, mediated through timely intervention.
That brings us to the current day. As Ressler’s experience with her chronically ill son in the hospital suggests, and The Pain Chronicles confirms, the treatment of pain in the United States—particularly chronic pain lasting several months or more—is largely ineffective because it is so little understood. The confusion makes sense. After all, the field is still pretty new. Pain medicine as a specialty did not get off the ground until after World War II, when the anesthesiologist John Bonica published the first textbook on pain management, relaying what he had learned from treating wounded soldiers. That was 1953. Even now, pain specialists in the United States are rare as hen’s teeth, numbering about 2,500.
As part of the foundation for her book, Thernstrom spent a substantial amount of time conducting background research at Tufts. She sat in on PREP classes and observed patients being assessed and treated in the program’s then-operative pain clinic. One thing she came away with most tellingly was the memory of “stricken bewilderment” she saw on the faces of patients, both at Tufts and elsewhere around the country.
The public toll of chronic pain is immense. More than 116 million Americans struggle with chronic pain each year, and associated medical charges and lost productivity cost the nation as much as $635 billion annually, according to an Institute of Medicine report released last summer. “That’s a conservative estimate of the overall economic impact, because it excludes children, members of the military and individuals in nursing homes or chronic-care facilities,” said Philip Pizzo, chair of the IOM panel that published the report. “We are looking at a broad demography of pain.”
Despite a wide array of techniques that doctors use to address the problem, including (but not limited to) drugs, surgery, targeted injections, physical therapy, ultrasound, acupuncture and meditation, pain is radically undertreated. As one example, a 1998 appraisal of elderly women in nursing homes with metastatic breast cancer found that only a quarter of them had received adequate pain treatment; one fourth got no treatment at all. A survey conducted by the Stanford University Medical Center in 2005 found that only 50 percent of chronic pain sufferers who had spoken to a doctor got what they felt was sufficient relief.
These findings were by no means aberrations. Melanie Thernstrom, a New York Times contributor in her 40s with ample time and money, ruefully describes bouncing from one recommended specialist to another around the country over the past decade without much success, flailing and helpless in her pain. From most doctors she gets a rapid-fire diagnosis and a briskly offered treatment plan. In one city after another, the process is the same: it’s as though she needs brain surgery but is being handed an aspirin.
By visiting leading pain researchers along the way, the author uncovers a dramatic gulf between what scientists and doctors know about chronic pain. “The gap between what’s going on in the lab and among practitioners is enormous,” says one prominent pain expert quoted by Thernstrom. “Pain management now is on the level that treatment of TB once occupied—driven by desperation on the part of the patient and the clinician.”
Many doctors are simply out of date in their thinking. Acute pain and chronic pain, though often mentioned in the same breath, bear little resemblance to each other, researchers have found. Acute pain is a broken arm. It hurts, and then it gets better. Chronic pain, in contrast, is like a beast that enters your body and makes its home there, taking on a life of its own. In many cases, the problem is too complicated for the palette of modern medicine to resolve.
Although the label remains controversial, chronic pain resembles a disease. It is a pathology of the nervous system that brings abnormal changes to the brain and spinal cord, damaging the body more severely the longer it endures.
The brain damage may come as a surprise. But when pain researcher A. Vania Apkarian at Northwestern University compared brain images of normal subjects with those of 26 patients who had suffered unrelenting back pain for more than a year, his scans revealed that chronic pain had dramatically reduced the gray matter of the patients’ brains. While normal aging causes gray matter to atrophy by approximately half of 1 percent a year, the gray matter of the chronic pain patients showed losses between 5 and 11 percent, the equivalent of 10 to 20 years’ worth of aging.
That wasn’t all. While normal aging causes atrophy in areas throughout the brain, chronic pain concentrates its damage in those parts of the brain devoted to modulating pain. Pain worsens, in other words, because of the intended function of the brain matter that has been lost. First, intense pain makes its presence felt; as one consequence, brain matter is eaten away; the pain becomes more acute; more brain function is destroyed, and so forth in a downward spiral.
Another complication stems from nervous system efficiency. The longer that nerves carry pain messages along their routes, the more efficient those pathways become. Recent research conducted at the University of California, San Francisco, has found that progressively deeper levels of pain cells in the spinal cord are activated the longer an injury is sustained.
“Chronic pain is like water damage to a house,” confirms Daniel Carr, professor of medicine at Tufts, director of the PREP program and a nationally known pain expert. “If it goes on long enough, the house collapses. By the time most patients make their way to a pain clinic, it’s very late.” In her book, Thernstrom underscores Carr’s observation by describing the more than 100 patients she met at pain clinics around the country. They were frequently shattered and weeping. Many had lost their jobs, their friends, their marriages or their homes as a consequence of the wrenching pain they bore.
Perhaps surprisingly, these patients were often stumped when asked to describe their pain. Language turns out to be a recurrent problem in the field. A doctor will typically ask a patient to locate his or her pain on a scale of one to 10. In many cases, that’s about as far as the conversation goes, or can go. Medical disbelief in a patient’s pain—which is, after all, subjective and frequently intertwined with depression—provides a further roadblock. When patients say they have pain, the doctor may answer simply, “Well, you shouldn’t.” (End of discussion.)
Not being heard by their physicians is one of the great complaints that pain sufferers express repeatedly. And after not being heard, patients are unlikely to follow whatever regimen the doctor proscribes. They feel they are getting the brush-off and rarely follow through.
In Thernstrom’s reporting, Carr stands out as a shining exception to the rule. She observes his office encounter with a middle-aged Boston patient who, years earlier, had undergone surgery for a brain tumor. The surgeon had accidently nicked a nerve, leaving her with obscure, debilitating pain that has turned her life inside out. Carr sits with the woman and listens patiently, calmly, his hands folded in his lap, before offering his recommendations for treatment. The woman feels heard for the first time in years. After religiously heeding Carr’s treatment plan, her pain relents (“He’s my savior,” the patient later says of Carr), and her life is changed.
A feeling of connection made the difference. Remember Pam Ressler and her son Nick in the hospital room? After she entered the PREP program and immersed herself in chronic pain and the largely uncharted world of those suffering from pain, she became even more ardently committed to the idea of using the Internet to reach those people and reduce their isolation. She had seen it work with Nick, so she figured it should work on a larger scale as well. “Telling the patient’s story and allowing them to have a voice is essential to the treatment of pain,” says Ressler, now an adjunct lecturer in the PREP program.
One proof of this lay in blogging. Last summer Ressler and some colleagues conducted a survey of 230 chronic illness and pain sufferers who had turned to the web for self-expression. Diseases or conditions represented among the bloggers included cancer, diabetes, fibromyalgia, Parkinson’s, lupus, rheumatoid arthritis, cystic fibrosis and cerebral palsy, among others. A general finding of the survey confirmed Ressler’s belief that blogging relieved personal isolation while providing a renewed sense of purpose. “First, I was helped, now I am helping…a reminder that I am part of the world,” wrote one respondent.
Ressler has taken the concept further in recent days by guest-hosting the weekly Wego Health/Health Activists tweet chat under the auspices of the PREP program (follow on Twitter @wegohealth). For a newcomer, it is eye-opening to enter this virtual community and see the many ways that participants can help each other, even in the abbreviated 140-character Twitter format. “We need to expand our toolbox for chronic pain,” Ressler suggests at the start of a recent hourlong chat. “Meditation, yoga, tai chi, all can play a role.”
A few seconds elapse before someone tweets in response, “I totally agree. We also need to add diet changes to our toolbox.” Another person tweets: “This month I have been learning meditation and taking a chronic pain yoga class. BOTH are helping to relieve my pain!”
The conversation proceeds at a rapid clip. Often the only trace of individual complaint comes through the contributor’s Twitter handle of “@arthritisashley” or “@lupusgrl.” It’s easy to imagine these people lying in bed at home or seated at work (do their friends and colleagues know their medical history?) or cruising along a country road anywhere on earth. The distribution of tweeters is global.
When one tweeter laments the high cost of her institutional dealings with chronic pain, another tweeter answers, well, that doesn’t apply to her, since she’s in the U.K. Another gives an exultant cry of “Hugs all to y’all, virtually” at signoff, and we collectively realize she’s probably joined the chat from somewhere down South.
Ressler distinguishes between pain and suffering, which in common parlance seem welded together. They are separate. “We can address suffering, but often we don’t,” she says, offering an example. When someone learns they have metastatic cancer, the initial suffering is tremendous. That person thinks, “Wow, I may not be around for my daughter’s graduation. My time may be limited.” But then, over time, that person acquires resilience and understanding. “If those parts can be built up, the suffering can go down, and so can the pain,” she says.
Bruce Morgan, the editor of this magazine, can be reached at firstname.lastname@example.org.