Living with Chronic Pain
Millions of Americans live with unbearable chronic pain, here's how three of them are dealing with it
Illustration by Rebekka Dunlap
Just under 6 feet tall, with long arms and legs and an athletic build, Laura Chase McGehee, 29, looks like someone you’d see in an ESPN highlight reel. She took up rowing in ninth grade at the Holton-Arms School in Bethesda, then transferred to nearby Walt Whitman High School for her sophomore year and joined its well-regarded crew team. She was voted team MVP as a senior, and made The Washington Post’s All-Met rowing team twice. Though she did not qualify for the U.S. Junior Women’s National Team, college coaches could see her Olympic potential. She chose to attend the University of North Carolina (UNC) at Chapel Hill, where she made the varsity boat as a freshman in 2005 and excelled.
Back pain had begun to trouble her during her senior year of high school. A UNC athletic trainer told her it was due to a misalignment in her hips that was caused by rowing. Surgery was unnecessary; physical therapy would eventually resolve the problem, McGehee was told, so she began wearing a brace and popping four Advils every morning. “In rowing, if you’re in an immense amount of pain, you’re doing it right,” she says. “You’re taught to push through the pain, and I was really, really good at that.”
While training during spring break of her freshman year at UNC, her regimen included icing, heating, stretching and electro-stimulation every day. She also took a narcotic painkiller prescribed by a doctor. But nothing soothed the stabbing sensations between her shoulder blades and down her muscled back. “I couldn’t remember what it was like not to have pain,” McGehee says.
Rowing defined her, she says. It was the first thing in her life she excelled at, so giving it up wasn’t an option. She tried to row through the summer, but eventually had to stop. At the start of her sophomore year, she trained and went to physical therapy every day. Following a team session with a sports psychotherapist, a doctor told her, “You have depression.”
McGehee had been feeling exhausted, but she was initially angered by the doctor’s opinion. “I’d been working hard, busting my ass, and this took me by surprise,” she says, “But as soon as she told me, I felt depressed. I just let go; I felt like Jell-O.” She began simultaneously taking Adderall, sleeping pills, antidepressants, Xanax and a painkiller, all of which were prescribed to her.
Finally, the UNC team physician told McGehee she wouldn’t be able to row without pain, so she decided to sit out her sophomore year while remaining a member of the team. “I felt relieved,” she says. Soon, a doctor said she was exhibiting signs of manic depression. “I was taking such a violent cocktail of medications,” she says. “There was so much anger—it had to come out.” After she lashed out at a group of friends with whom she planned to share a house, they made plans without her. Still unable to row as a junior, the studio art major traveled to Florence, Italy, during the spring semester. “I was just manic depressive in another country,” McGehee says.
Her teammates understood her pain and tried to empathize with her. Once she stopped rowing, she lost that support system. Other friends couldn't relate to what she was going through, or comprehend how all-encompassing it was for her. McGehee felt isolated and alone. She was a healthy-looking young woman in agony. Pledging a sorority helped, but it wasn’t enough. “You’re not the same Laura Chase,” she would hear. I am the same, she would think, you just don’t realize it.
McGehee returned to UNC for her senior year, but couldn’t row. “That’s when it really got frightening,” she says. “I didn’t go to a lot of classes. I was thinking about the value of my life.”
Self-portrait by Laura Chase McGehee
Odds are that you know someone in chronic pain. Doctors generally agree that pain is considered chronic if it lasts at least six months. Headaches, joint pain, backaches and nerve pain can become chronic. Other types of chronic pain include tendinitis, carpal tunnel syndrome, sinus pain, fibromyalgia, arthritis and complex regional pain syndrome, which can begin with nothing more than a kick to the shin and then migrate throughout the body. Generalized muscle pain also can develop into a chronic condition.
Chronic pain affects an estimated 100 million American adults, more than one third of the U.S. population, according to “Relieving Pain in America,” a 2011 report by the Institute of Medicine. A 2015 Journal of Pain report by researchers at the National Institutes of Health found that approximately 25 million American adults have moderate to severe chronic pain that limits activities and diminishes their quality of life. “You have to learn to coexist with it,” says Beatrice Bowie, 64, of Germantown, who suffers from sickle cell disease, a disorder that affects red blood cells, “because the pain is not going away.”
Lifting a chair at a community event 14 years ago changed the life of Philip Stone (not his real name) forever. Stone, a data analyst who lives in Potomac, now worries that he will lose his job and health insurance if his condition is publicized. “With this kind of back pain...I lie in bed counting the seconds until my next doctor’s appointment,” says Stone, 63. “On a good day, I can function. On a bad day, you could bury me and I’d be happy.”
Ignited by an illness, stubbed toe, wrenched knee—or even stress—chronic pain blazes into the nervous system. It’s often an invisible affliction. Unlike acute pain, which typically is caused by injury and often has some visual manifestation, chronic pain sufferers may not exhibit any symptoms. Wracked in agony, they often are viewed with doubt, their complaints eventually dismissed by those around them. Stone says he was speechless when a doctor told him he was “overthinking” his pain. “I wanted to punch him,” he says.
“Chronic pain is poorly understood, not only by the general public but by health care providers,” says Bethesda physiatrist Michael April. “We don’t have objective ways to measure pain.”
As Dr. Ann Berger, chief of the Pain and Palliative Care Service at the NIH Clinical Center, puts it: “There is no pain-o-meter.”
There is no cure for the vast majority of people in chronic pain, either. There is coping and the use of different therapies to manage the pain. Acute pain, though it may last for some time, is often resolved. If not, the pain is considered chronic. It afflicts the young and the old, the ill and those who are otherwise healthy, often leading to depression and, in some cases, thoughts of suicide. The Centers for Disease Control and Prevention (CDC) calls the use and abuse of prescription painkillers to treat chronic pain an “epidemic.”
Specialists say chronic pain can be difficult to treat because the underlying cause is not always clear. Traditionally, chronic pain has been managed with medication. However, medication alone is not a solution for everybody. Prescription opioids such as OxyContin and Vicodin—which, when abused, can lead to heroin use—are often authorized by providers who aren’t pain specialists. As if the insult to the body isn’t enough, chronic pain sufferers are sometimes stigmatized as lazy, pill-popping drug addicts.
“Chronic pain greatly alters your identity,” says Bethesda-based counselor Rachel Noble, who helps patients find the right mix of therapies. “It chips away at the things you’re able to do. It destroys your relationships with others—family, friends, work. It ends all the certainty you’ve had in your life.”
Noble and several other medical providers describe patients who simply retreat to their bedrooms, unable to face friends, perform household or work tasks, or even relate to their spouses. Stone says he and his wife had to settle for hugs rather than lovemaking “because you don’t know what can set off pain.”
Gwenn Herman founded the nonprofit Pain Connection in 1999, four years after being rear-ended by another driver outside of her kids’ Potomac school. Her head and neck pain from the accident still persists to this day. Photo by Michael Ventura
In 1995, Gwenn Herman was in her car, preparing to drop off her young children at a Potomac school, when she was rear-ended in the queue of cars by a woman who said she mistook the gas pedal for the brake. Herman initially felt OK, but within a few hours she experienced terrible neck pain “that ricocheted through my body.” The mishap led to several surgeries and head and neck pain that persists to this day. “The emotional pain was just as bad,” says Herman, now 61. “My personality changed—I was short-tempered, and I lost many of my friends. I physically couldn’t play with my kids, and I felt guilty because my husband was doing everything. My emotional pain was just as bad as my physical pain.”
Four years after the accident, Herman founded the nonprofit Pain Connection “to try to normalize what we’re going through.” In the beginning, her group met at Davis Library in Bethesda. As the group grew to dozens of members, Herman moved the monthly meetings to the Nonprofit Village building in Rockville.
One afternoon in February, Herman convened a support group meeting around a rectangular table. The group was small, owing to illness and inclement weather; Herman said meetings may range from three or four to 15 members. After introductions, Herman led the four participants through a discussion, using a list of “myths and misconceptions” about chronic pain.
Myth: Pain means you don’t want to work or be responsible. Myth: Everyone on opioid medications will become addicted.
These prompts sparked a conversation about common experiences and feelings. Anna and Julie, both middle-aged, are longtime sufferers. Adan, a 30-something Hispanic construction worker who speaks little English, has chronic pain from a work injury. Megan came in place of her 27-year-old son, Rick, who became disabled four years ago after lifting a piece of pool-cleaning equipment. As they spoke, emotions were raw.
Anna: “There’s before and after. My business is gone. I was in bed when my teenage son needed me. My friendships fell off.”
Megan: “My son had to come back home to live. I’ve watched him cry for a day and a half, he was in such pain. There’s no comforting him. Now he’s suicidal all the time.”
Adan: “When I’m in bed, I cry. I think, why me?”
Julie: “My marriage ended, and chronic pain was one of the causes. I had two professions, but I couldn’t work.”
Megan: “He needs a support group, but he knows he can’t sit—he’s embarrassed to lie on the floor and he knows he will cry.”
Julie: “I was in deep, deep depression. There are special Facebook groups, and I’m in five.”
Near the end of the 90-minute session, Herman led an “imaging” exercise, asking participants to concentrate on their breathing. “Let go of all that anger,” she said. For several minutes, the group sat with eyes closed, the sounds of rhythmic exhalations filling the room. Before leaving, they talked among themselves, sharing contact information for doctors and specialists and quietly consoling one another, seemingly reluctant to leave.
While some experts caution that support groups are useful only if they rise above complaint sessions, which can deepen depression, Noble says these groups can reduce isolation and the “shame” of taking drugs. “My job,” says Noble, who has spoken at a Pain Connection meeting, “is to eliminate hopelessness.”
Chronic pain sufferer Beatrice Bowie has sickle cell disease, a disorder that affects red blood cells. “You have to learn to coexist with it,” she says, “because the pain is not going away.” Photo by Michael Ventura
Beatrice Bowie’s sickle cell disease restricts the flow of blood to her bones and has resulted in two hip replacements, a cyst on one of her ovaries, leg ulcers and other complications. In 1994, she was forced to stop working at a Bethesda real estate firm and had to be hospitalized when she couldn’t rise from using the toilet. Now Bowie, who was born in Ghana, receives regular blood transfusions at NIH and participates in a sickle cell study.
“When you come from a Third World country, you think someone at home is doing black magic,” says Bowie, who keeps a written list of her prescriptions to give to ER staff because at times her pain is so severe that she cannot speak. “When you are in a pain crisis and show up at a hospital emergency room, some medical staff will ask you point-blank if you are an addict and if you are there to get a fix.” Patients are unfairly stigmatized, she says.
“Everyone has a hard time conceptualizing chronic pain,” says Dr. Michael Clark, a psychiatrist and director of the Chronic Pain Treatment Program at Johns Hopkins Medicine in Baltimore. “It’s not one clinical entity. It has greater intensity, causes impaired function and can migrate beyond the original pain site. The nervous system becomes distorted. Pain receptors get amplified and internal pain blockers minimized, which can make even the lightest touch be perceived as painful.
“If you enter a doctor’s waiting room and say you have cancer or diabetes, people understand that,” he adds. “If you say you have chronic pain, they think you’re a drug addict.”
Clark, who has been treating chronic pain patients for three decades, says treatment should involve all the tools in the medical chest, from exercise, acupuncture and injections to medication, massage and counseling. “Without a comprehensive treatment plan,” he explains, “patients may be disabled and use a lot of opioids and have a high rate of psychological disorders.”
According to the CDC, the number of prescriptions for painkillers such as oxycodone, morphine, fentanyl and hydrocodone, has increased dramatically over the past 20 years. (There were 76 million in 1991 and 259 million in 2012.) In 2014, 40 percent of all lethal drug overdoses in the U.S. were related to prescription pain relievers. The Maryland Department of Health and Mental Hygiene reported that 887 Marylanders died from opioid-related causes (including heroin overdoses) in 2014. There were 19 deaths from prescription painkillers in Montgomery County, and 33 heroin-related fatalities.
Opioids often are prescribed when comprehensive treatment is not available, pain experts say. Acute pain that’s not managed properly may develop into chronic pain, and, according to “Relieving Pain in America,” most Americans who live with chronic pain do not receive appropriate care. The care that’s provided is often fragmented, the report concluded, and without a comprehensive plan, patients may encounter difficulty obtaining the full range of potential treatments.
The undertreatment of chronic pain has consequences beyond the obvious, says Berger, the NIH pain expert. “Studies have shown that the longer a person is in chronic pain that is untreated, the greater chance the brain changes,” she says. “It’s called central sensitization syndrome, and it’s like resetting the thermostat so that any little pain is felt more severely—the pain threshold becomes lower.”
Berger has more than a professional interest in chronic pain. Her son, who is in his 20s, suffers with chronic abdominal pain due to a birth defect that wasn’t detected until he was 11 years old. Berger says he uses unconventional “mind-body modalities” to calm the brain, such as reading aloud Shakespeare’s soliloquies. “I’ve certainly learned to tolerate my abdominal pain,” he wrote in a short essay that Berger uses when she lectures on chronic pain. “But is my abdominal pain really less painful, simply because I often ignore it?”
At their request, some of Berger’s chronic pain patients have received “outside the box” therapies, including a private viewing of Tai Shan, a giant panda cub born at the National Zoo, and a visit to NIH by some of the female waitstaff from a Hooters restaurant. Berger also recommends what she calls “retail therapy”—shopping—as another way to distract her patients from constant thoughts of pain.
Graduating from UNC in 2009 was a huge achievement for McGehee. She began a career as a photographer, gaining experience at newspapers and ultimately establishing her own freelance business. (Her work appears in Bethesda Magazine.) Still, pain remained as much a part of her life as cameras; toting heavy equipment only exacerbated her condition, and she relied heavily on painkillers. One doctor told her it was OK to grieve her loss of identity as a way of coping with the change in her personality.
“The pain was so bad at times, it took my breath away,” she says. “I was abusing the hell out of tramadol," a narcotic used to treat moderate to severe pain. By 2013, her mood swings were so debilitating that she lost her job with a prestigious photography collective. Finally, clinical psychologist Philip R. Appel, a Bethesda pain specialist, suggested that McGehee apply for a program at the Mayo Clinic.
In the summer of 2014, she flew to Rochester, Minnesota, to be evaluated, and that November was admitted into the three-week program at Mayo’s Comprehensive Pain Rehabilitation Center. Although tailored to each patient, the program teaches pain management skills and techniques for physical reconditioning, and supervises medication changes, including withdrawals from pain medications.
McGehee ultimately was diagnosed as having chronic pain due to a hyperactive nervous system; essentially, her nerve endings were on fire. She had no musculoskeletal damage, but the stress of rowing and other exercise was triggering the muscle-to-nerve chain reaction. Mayo Clinic doctors weaned her off the narcotics and most of her other drugs, and used chronotherapy—resetting the sleep clock—to restore a drug-altered circadian rhythm that had robbed her of regular sleep. She went back to photography and exercise, managing the pain as well as she could, reassured by doctors that she wouldn’t be doing any structural damage to her body.
At home, a different therapy awaited. Through OkCupid, a dating website, she met a French engineer working in Baltimore. She fell hard, and didn’t want to risk a sudden breakup by hiding anything from him. So she laid out her troubled history of pain and prescription drugs. “I have a lot of baggage,” she confessed.
“Well, I don’t have any,” he replied. “So I don’t mind taking some of yours.”
They married in a civil ceremony in December 2014; in July, they’ll have a church wedding in France. Mostly drug-free since late 2014, McGehee is working and exercising regularly. Pain is not her only companion now. “I didn’t know that this kind of happiness existed for me,” she says quietly. “Even still, I keep waiting for the other shoe to drop.” n
Steve Goldstein is a freelance writer and editor. To comment on this story, email firstname.lastname@example.org.