Over 10 million Americans across the entire age spectrum experience pain in their lives on a daily, crippling basis. In fact, too often the unrelenting pain become’ s a way of life for the family and friends of these people, as well as the patient Traveling from doctor to doctor in search of miracle cures and powerful drugs, they soon learn that nothing helps for very long.
But in an article in the New York Times (“Helping Families Deal With Chronic Pain,” Aug. 26, 1985) Georgia Dullea tells how many individuals and their families have found lasting help and hope for their circumscribed lives from pain clinics that emphasize the psychological aspects of dealing with chronic pain.
Ms. Dullea focuses on a couple in their 30’s, Bill and Phyllis Kingery, whose lives were immobilized by Bill’s immobilizing back pain. Mrs. Kingery would come home night after night from her secretarial job to find her husband, a former construction worker, wedged into a reclining chair, a heating pad on his back. Some evenings she would ask how he was feeling and hear him reply that the pain was bad. Other times he would be too drugged to give a report, and in a way, she admitted, she was relieved not to hear about it
“I knew he was using three different doctors to get pain drugs and I knew they weren’t helping him anymore, ” Phyllis recalled, “but I was feeling so bad for him I shut my eyes.”
According to her husband: “That hot pad was permanently implanted in the recliner. Our life revolved around my pain. We never went anywhere unless I had a handful of codeine.”
However, since his discharge about 8 months ago from a 4-week program at the Mayo Clinic’s Pain Management Center, Mr. Kingery has abandoned his heating pad, the drugs and the habits that he learned were contributing to his agony. “If I catch myself complaining now,” he says, “I know I’ve blown it because there’s nothing she can do about the pain.”
His wife has also changed: “They taught me at the center that I was behaving like an alcoholic’s wife. I no longer ask about the daily aches and pains. Now we talk about his classes at the community college, about our jobs and having children some day, all the normal things we never talked about because his mind was on the pain.”
According to Dr. Russell Portenoy, co-director of the Unified Pain Service of Montefiore Medical Center and Albert Einstein College of Medicine: “One of the least recognized and probably most crucial factors in chronic nonmalignant pain is the patient’s relationships, not only with a spouse, but with other family members.”
Dr. Portenoy says that “For a significant percent of patients, not all, chronic pain has become a style of life. It is the way one lives in the family and interacts with the world at large, by being chronically in pain. The patient and spouse develop a kind of organic relationship always revolving around the pain.”
These clinics, therefore, usually involve the spouse to help break down so-called “pain behavior” – emotional factors that perpetuate the cycle of pain. Clinicians have found that pain can persist long after its cause when a patient is being rewarded by special attention and sympathy and not expected to take on responsibilities. These clinics help reshape behavior by a variety of treatment modalities including acupuncture, zen, biofeedback, physiotherapy, relaxation techniques and group psychotherapy. Many programs require a hospital stay, others are done on an outpatient basis. Most confront each case with a team of specialists – physicians, nurses, psychologists and physical and occupational therapists – and most involve spouses or others living with the patient
At the Mayo Clinic where Mr. Kingery was treated, coordinator Mary Jane McHanly emphasizes that candidates for this kind of approach suffer from chronic pain for which there is no medical or surgical treatment, such as back, abdominal, ann or leg pain or headaches. “We don’t treat anybody with arthritis or cancer or anything fatal,” she says, “because we tell people to ignore pain and they probably need to pay attention to it”
Ms. McHardy says that the key to managing chronic pain is physical conditioning “and learning you’re not going to break if you’re physically active.” Mr. Kingery now rides a stationary bicycle twice a day and walks at least two miles. Through biofeedback he has learned relaxation techniques to reduce discomfort and coping strategies to deal with it
Instead of living in his living room recliner, he now attends a community college classroom where he is studying restaurant management and commutes to a part-time job. The couple now go out to dinner and the movies. As Ms. McHardy puts it: “You’ve got a choice of staying in bed and hurting or going out and having fun and hurting, and that makes the pain go away.”
Spouses are taught valuable lessons on how to encourage activities and attitudes that reflect a healthy outlook. They also learn to be neutral to excessive complaints and other pain-related behavior. This can be difficult for overly mothering spouses who for years have hovered about, fulfilling every need, taking on every responsibility, empathizing at every turn. Experts say that most of these caretakers mean well, though some may be motivated unconsciously by a desire to keep the spouse dependent
The other extreme is the spouse, who is often oblivious to the other except in times of suffering. This spouse can foster pain behavior by inattentiveness just as much as the spouse who is overly solicitous.
Dr. John Loeser, director of the pain clinic at the University of Washington School of Medicine, noted that studies have been done to predict case outcome according to personality traits of the patient’s spouse. The outcome, it seems, is better predicted by the spouse’s personality than the patient’s: “Clearly, the spouse plays a role in the perpetuation of pain behavior,” Dr. Loeser said, “but the role varies dramatically from case to case. There is no simple answer.”
The success of these pain clinics should certainly give new hope and energy to the millions of people trapped in the vicious cycle of chronic pain. As the Kingery’s experience shows, it is possible to take control of one’s life even in the face of daily debilitating pain. Their case is also further proof that healing has less to do with the sheer mechanics of the body and more with the integration of the many planes of our humanness – the physical, psychological, emotional and spiritual aspects of every day existence.
