Those who have a “why” to live can bear with almost any “how.”
—VIKTOR E. FRANKL, Man’s Search for Meaning 1
A person’s well-being is often linked to the big picture—his or her sense of meaning and purpose. I have often found that in our systems of care, caregivers attempt to “fix” problems superficially rather than taking the time to seek out and cure the core issues that may lie beneath them. But there is much to be learned from Jewish survivors of Nazi concentration camps about the significance of one’s meaning and purpose for longevity and joie de vivre.
LESSONS FROM SURVIVORS OF NAZI CONCENTRATION CAMPS
The vital importance of a sense of meaning and purpose became clear a few decades ago to the American Israeli medical sociologist Aaron Antonovsky, who was interested in understanding what he called the “origin of health.” In his studies, he investigated a population that had been through extreme trauma: survivors of the Holocaust. In a group of Israeli women over age fifty who had emigrated from Eastern Europe after World War II, he found, as he expected, that those who had survived concentration camps more than a quarter century earlier tended to be less well-adjusted than women of the same age who had not been camp inmates. The camp survivors had greater emotional stress and more worries, and overall they derived less pleasure from their activities than the other group of women.2
But the big surprise of the study, Antonovsky wrote, was that an impressive number of the camp survivors were doing quite well. Twenty-five years after the end of the war, nearly 40 percent were in excellent physical health for women of their age. Twenty-nine percent showed no sign of emotional symptoms or “malfunctioning.” Many were involved in a range of activities and described themselves as happy. When it came to ranking the satisfaction they got from their lives, nearly 30 percent rated their daily experience at least an 8 out of a top score of 10.
Antonovsky felt this unexpected finding was worthy of discussion. “Where did their health come from?” he wondered. “What has enabled some women, subjected to the most destructive experiences conceivable, to lead well-adapted lives?” Antonovsky put the ultimate question this way: In the tumultuous “stream of life . . . whose nature is determined by historical, social-cultural, and physical environmental conditions—what shapes one’s ability to swim well?”
Antonovsky suggested a few answers. For one, he thought the women’s traumatic experiences may have helped them devise strategies to put their everyday stresses into perspective. But perhaps most significantly, the women had developed meaningful roles in their new lives—as wives, mothers, friends, and professionals—and these helped define and sustain them. In writing about “swimming well,” Antonovsky coined the term “salutogenesis” (from the Latin salus, meaning health, and the Greek, genesis, meaning origin) to describe the importance of a health-promoting worldview, one that encourages people to develop the appropriate skills and resilience to navigate life’s tumult.
“HEALTHY” VERSUS “SICK”
Antonovsky’s various theories about health have been used in the developing field of psychoneuroimmunology. But the term he developed, “salutogenesis,” is particularly helpful overall. It describes how professional and family caregivers might think about serving people.
Most of the time, when someone is hurting, helpers focus on the state of illness—on “pathogenesis.” (Doctors, especially, are trained to pursue what’s wrong and provide direct solutions.) They attend to the cause of a disease and its treatment. For many conditions, like cancers that must be considered with great specificity, a pathogenic approach is essential. But Antonovsky believed that the most important ingredient for health was defining a personal sense of meaning. In other words, to sustain themselves, people must believe that their lives have a purpose. A salutogenic attitude toward health care, therefore, focuses less on the disease and more on the individual as potentially healthy. It looks for a person’s sources of meaning—such as family, career, creativity, friendships, and spirituality—and uses them as both the route to better health and the ultimate goal.
I believe that this positive attitude is a powerful addition to the way caregivers can engage in serving people. Some medical disciplines have already begun exploring how individuals’ sense of meaning impacts their health outcomes. For one thing, happiness is a relative concept. In one study, there was no significant difference in happiness among new paraplegics and lottery winners after a certain amount of time passed.3 Several recent studies in rehabilitation medicine have shown how spirituality affects patients’ recovery from traumatic brain injury. One investigation found that people who described themselves as having a strong personal devotion to a higher power had better outcomes than others—even better than those who participated regularly in religious activities.4 In other words, the researchers could predict better outcomes for those who could draw on their sense of meaning than those who were simply going through the motions.
In fact, the salutogenic shift in focus takes into consideration that when people shine a spotlight on something, they can heighten its presence. If they want more health, they have to give it their attention. In this chapter, I focus on the power of the positive, the possible, and the potential to increase health and improve outcomes. However, first we need to understand the dark side of this equation.
THE TOLL OF THE NEGATIVE
Many studies in recent years have documented the way mind-centered problems like chronic stress can cause physiological damage to the body. Stress is now widely known to heighten harmful levels of the steroid cortisol, a change that can lead to heart disease, sleep disorders, and digestive problems. These effects can persist throughout life.
A study by Vincent Felitti and Robert Anda published in the American Journal of Preventive Medicine entitled “Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults,”5 made a very strong case for how emotional trauma in childhood can undermine physiological health for a lifetime. Dr. Felitti had been a weight loss specialist at a Kaiser Permanente hospital in Southern California. In that capacity, he had helped one of his obese patients lose more than one hundred pounds of excess weight—a great triumph for both of them.
But after only a few months, his patient regained all that weight and more. Rather than throw his hands up in frustration, however, Dr. Felitti had an open and frank conversation with this young woman. He made the connection. Their discussion revealed that his patient had been the victim of childhood sexual abuse at the hands of her grandfather—a situation for which she felt great shame and pain. But now, her newly improved figure had attracted the attention of an older male coworker. Rather than making her happy, his flirtatiousness sent her into a tailspin. Fearing sexual contact, she once again consoled herself with food, padding her body with excess weight as a defense while risking the plethora of destructive health issues that accompany obesity.
Upset but also fascinated by this woman’s situation, Dr. Felitti began interviewing all of his obese patients. Soon he and his colleagues set upon a much more ambitious project. After having analyzed the medical records of eighteen thousand patients at the hospital, they made a surprising discovery. As Dr. Felitti put it, “Time does not heal some of the adverse experiences of childhood. We came to recognize that the earliest years of infancy and childhood are not lost, but like a child’s footprints in wet cement, are often lifelong.”6 These “adverse childhood experiences” (which he called ACE) are all emotional. They include categories of abuse (psychological, by parents; physical, by parents; sexual, by anyone), emotional or physical neglect, poverty, housing instability, discrimination, family conflict, and household dysfunction (alcoholism or drug use in homes, loss of biological parents before the age of eighteen, depression or mental illness in the home, mother treated violently, and/or imprisoned household member). These emotional traumas were strongly correlated with physiological adult disorders such as cardiovascular disease, cancer, chronic lung disease, bone fractures, and liver disease as well as psychological issues such as hopelessness, anxiety, and divorce. In fact, 61.4 percent of the people in this study had a mental health condition that disturbed their work or other activities for two weeks or more.
Protective factors would include safe, cohesive neighborhoods; parental warmth and involvement; a connection with a caring adult (counselor, clergy, relative); and a parent who did not suffer trauma.
Another example of how a negative mind-set can harm health outcomes occurs when caregivers take a pathogenic approach and focus only on an illness and its symptoms. This attitude may even sustain a disease. For some people, paying incessant attention to their condition shapes their identity and becomes a comfort. Take, for example, this story relayed to me by a gastroenterologist who treated a woman with Crohn’s disease. Over the years, Candace had taken great care of herself and had not only learned all she could about the disorder but had also become involved in Crohn’s disease advocacy and fund-raising. She had even become the leader of a local support group.
At a certain point, following some tests, the gastroenterologist told Candace during an office visit that he had good news: she likely did not have Crohn’s disease after all and could begin managing her condition with a different approach. He could not have been more astonished at her response. Candace stood up—and stormed out of his office. It became clear to her physician then that her focus on the ailment had helped shape how Candace saw herself. Recasting her symptoms in a new framework actually threw her sense of self and her identity into turmoil.
A constant focus on pathology can have such harmful effects. Some people who have chronic conditions come to view themselves as sick, above all other aspects of their being, and the rest of their lives become essentially paralyzed. Their ongoing medical needs—and even their interactions with physicians—can reinforce this self-image. In one study of women with fibromyalgia, many patients said their condition isolated them from doctors (who sometimes questioned the validity of their illness) and from friends (who were frustrated about suddenly canceled plans). Many complained that the disease had robbed them of their identity: “They no longer recognized the person that they once were and struggled to recognize the person that they had become.” The pathology had eclipsed all other aspects of their lives.7
When people lose their previous sense of self, as in the case of these individuals, the disease becomes their new identity. It is then difficult for them to appreciate their lives outside of their ailment. In support groups for patients with fibromyalgia, these interactions can result in improvement or not. People in the groups who do not improve often engage in conversation about the severity of their complaints. This can create a sense of competition, each person vying to top the other when the symptom is the focus. On the other hand, research has shown that participants in support groups focusing on stressful triggers that may be at the root of their hypersensitive muscles showed significant improvement in pain. Sessions focused on structured, written, emotional disclosure and emotional awareness exercises. This had a larger pain reduction benefit than many of the medicines usually prescribed for this condition including gabapentin (Neurontin) and pregabalin (Lyrica). In fact, this intervention improved pain, tenderness, and self-reported physical function for at least six months compared with those in a control group who did not participate in the meetings.8
A HEALING PARADIGM
Pathogenesis focuses on the severity of pain and the difficulties that one encounters, but I am suggesting that we change the conversation to one that’s hopeful and empowering. Opportunities for healing reside in moving from what’s wrong with individuals’ bodies toward what’s important to them and gives their lives meaning. Most people need help in doing this—it’s so much easier to accomplish when someone walks with them, providing support and encouragement. Caregivers are essential in this process. They can focus on patients’ health goals by asking simple questions such as “What gives you energy to get up in the morning and go about your day?” This allows patients to see their lives with meaning despite their pain or disability. Other great questions: “If you weren’t in pain, what would your life look like?” and “What do you want your health for?” A compassionate connection allows caregivers to help patients exchange their problem lists for their health lists—that is, to emphasize what they feel they need most to be healthy and resilient. This salutogenic approach helps caregivers focus on the person beyond the illness. In addition, it incorporates the idea that both mind and body can be engaged in the pursuit of health.
What individuals think and expect can change the course of their body’s responses. Many studies have affirmed the physiological effects of positive expectations. As we’ve seen, placebos can play an important role in improving health and pain relief. Moreover, very recently, researchers in Virginia have found that the lymphatic system flows through the thinking and emotional parts of the brain (the anterior cingulate, orbitofrontal and insular cortices, the nucleus accumbens, amygdala, and periaqueductal gray matter) described in Chapter 2. Lymph carries immune cells. Prior to this, it was believed that it could not cross the blood/brain barrier and enter the brain. But now scientists know that there is a direct connection between emotions (as generated in the brain) and immune function. How people feel can affect their ability to fight diseases.9
Positive interactions and outlook can go a long way. In 1987 the British Medical Journal published a study from the University of Southampton in England that looked at whether patients with vague viral symptoms fared better when doctors used positive phrases in talking about the diagnosis and treatment. Researchers found people who were exposed to positive expectations such as “You likely have a rhinovirus that will cause you to have symptoms for 8 to 10 days,” recovered from their symptoms faster. In contrast, when the physician offered more uncertain comments, such as “I am not sure what is wrong with you,” or “I am not sure that the treatment I am going to give you will have an effect,” patients’ viral illnesses dragged on longer. Two weeks after the visit, the group of patients who had received positive comments had a 64 percent recovery rate, while the group that left with uncertain feedback had a recovery rate of only 39 percent.10
Why did some patients recover sooner? We could say that they benefited from the healing effect—their hopefulness and sense of control were heightened by their physician’s positive attitude and expectations. Caregivers can bring positivity to bear as a healing tool when they encourage others to focus on what’s functional, important, and worthwhile about their lives. With ever-rising evidence about the various ways the mind and body interact in wellness and disease, clinicians might do well to think about care that is just as much salutogenic as it is pathogenic and that concertedly engages the power of the mind. This shift would use a person’s own capacity for positive expectations and optimism, self-awareness, faith, self-motivation, and connectedness, all in the pursuit of “health.”
A salutogenic perspective can restore confidence to address problems that seem insurmountable. It can help people understand their health in ways that don’t diminish them (as some feel blamed for their weight or their lifestyle habits), but instead honor their strengths and their potential for self-healing.
THE POWER OF POSITIVE EXPECTATIONS
Much has been written over the years about self-fulfilling prophecies and how expectations shape outcomes. A lot of this research is based on the breakthrough work of Robert Rosenthal, then a professor of social psychology at Harvard University. In 1965 he conducted what has become the famous Oak School study in South San Francisco. Dr. Rosenthal wanted to see whether teachers’ expectations influenced the IQs of their students, who in this case were minorities—their parents had come from Mexico, and Spanish was spoken in the home.11
Dr. Rosenthal and the principal of the school (a fellow-researcher in this study) tested the IQs of incoming first graders in traditional ways. Without divulging any of this information to their teachers or parents, they randomly assigned these first graders to two groups. They told the teachers of the first group that their kids were “average.” They based this false assessment on the “Harvard Test of Inflected Acquisition”—a nonexistent intelligence test. The teachers of the second group, however, were informed that their students showed a “spurt” in intellectual growth and were more gifted—also based on this bogus test. In truth, the kids were placed in these groups arbitrarily and without regard to any test results.
After one year, Dr. Rosenthal retested the children’s IQs. The outcome was astonishing. In the “average” group, the children’s IQ increased by 12 points. In the so-called gifted group, however, IQ increases were more than double that of the “average” kids—27.4 points. The only reason for these differences was how the teachers treated the youngsters based on the former’s expectations for performance. Dr. Rosenthal called these self-fulfilling prophecies the “Pygmalion effect in the classroom.” In Greek mythology, Pygmalion was a sculptor who fell in love with his creation, and it came to life. As Dr. Rosenthal defined it, higher teacher expectations lead to improved student performance. The children whom they believed in came to life, just like Pygmalion’s statue.
In 1978, Dr. Rosenthal conducted a meta-analysis that combined the results of 345 studies.12 Again, he found that the positive effect of teachers’ expectations on their students was very much like what other scientists have discovered about the placebo effect—a 30 percent improvement. His work clearly shows the power of positive expectations.
The same can be said of how people limit themselves by their perception of what’s possible. In 1890 the U.S. Census Bureau first used the Hollerith tabulating machine (a punch card device that was an early precursor to IBM) to count the country’s population. Workers were told that once they learned the rather complicated system, they were expected to process 550 cards a day. Those who went beyond this number felt stressed and anxious. However, a second group of 200 workers was hired and trained but not given any sense of how many cards they were expected to handle. Those employees processed 2,100 cards a day without any anxiety or stress.13
The world of sports is rife with these kinds of examples. For instance, it was thought impossible to run a mile in less than four minutes—so no one tried. Then, in 1954, Roger Bannister broke the “four-minute barrier” by 0.6 second, and now completing a mile in under four minutes has become standard for male middle-distance runners. If you don’t believe in yourself or others, your lack of confidence becomes destiny. However, consider this: if you feel you’re too small or insignificant to make a difference, try sleeping with a mosquito!
These are all illustrations of how the mind limits or frees and contributes to self-healing. Caregivers can easily translate these concepts to how they behave toward the people they want to serve. In health care, clinicians are usually too quick to say, “You need medication.” Drugs suppress symptoms, true, but they also don’t give the body the opportunity to heal itself. When the mind harbors the expectation that one will need to be on a certain drug forever, that becomes the physical reality. But if I, as a physician, give my patient hope and encourage him to believe in his unlimited potential for health, his body will do all it can to heal itself.
Faith that others can heal is a powerful piece of the connection. One of the most important things that I can do as a physician is believe that my patients can get to a better place. This drives our energy toward collectively finding a way.
However, it is injurious to overstress the importance of self-healing at the expense of a patient’s well-being. For instance, if I am excessively optimistic and feel that the body can overcome any illness, I may push my patients too hard. Then, instead of helping, my adherence to a philosophical framework that is at variance with patients’ true needs can cause a flare-up of the disease. I see this all the time in the management of chronic fatigue syndrome. One of the best treatments to stimulate energy production is the gradual titration of movement and exercise. But if doctors push their patients too quickly with overconfidence in the body’s self-healing potential, they can trigger a relapse that results in worsening symptoms. We can cause harm if we don’t appreciate the self-healing potential of the body, but we can also cause harm if we believe in it too much. Balance is an all-important component to healing.
HOW LARGE A ROLE CAN THE MIND ACTUALLY PLAY?
In our clinic, we saw a dramatic change in a particularly challenging patient when we took a salutogenic instead of a pathogenic approach with Maryann, a forty-year-old woman who had been plagued with myriad frustrating and hard-to-define symptoms. She was deeply fatigued, achy in her joints, generally run down, and seemed to be allergic to everything around her. She had headaches and intermittent nausea. She felt terrible indoors and only mildly better outside. After testing negative for a wide range of conditions, she was beginning to feel despair, having no way to understand what was happening to her body or why she felt so wretched. On some level, she thought that she was “going crazy.” One diagnosis that had been suggested to her was multiple-chemical sensitivity (MCS), a condition that’s poorly understood and that some in the medical profession have disputed as being a real, organic disease caused by external irritants. People with MCS feel they have become intolerant of, or overly sensitive to, even low levels of chemicals. Their symptoms vary from person to person, but the effects can be wholly disabling, and there are no drugs or other therapies to treat the condition.
But misgivings notwithstanding, having the label was one step in the right direction for Maryann. It legitimized that her body was going through something devastating and that her suffering was real. She wasn’t sure, however, how she felt about it. Adam Rindfliesch, the practitioner in our clinic who was seeing Maryann, invited her to consider her diagnosis from a different angle. Instead of perceiving herself as a victim of chemicals or irritants in her environment, in other words, constantly oppressed by her surroundings, she could appreciate her physical response as a manifestation of her personal strengths. She was reacting to chemicals because she was quite attuned to her environment. Her sensitivity to their presence was a special awareness she possessed. Many people with this condition are highly intuitive. So instead of viewing her condition as a defect in her body’s immune system, she was encouraged to reframe her response and understand it as part of the gift of being a highly sensitive individual. This interpretation fit how she saw herself, in fact, as an artist and a sensitive soul.
The conversation represented an important turning point for Maryann. She had a diagnosis, which helped affirm her physical distress. Over time, she developed a keener understanding about when her symptoms would occur and found that she was better able to anticipate and tolerate the effects on her body. But she also began to comprehend her physical symptoms differently, as part of her unique personality and her approach to the world. When she and her physician made a plan for her treatment, she felt good about the idea of getting at the root of how she saw herself and coaxing her body into a more balanced state. As a highly sensitive individual, Maryann was often anxious and had what we call elevated “sympathetic tone”—that is, her fight-or-flight response was always on overdrive. So she was encouraged to mediate her tension with deep breathing exercises, meditation, and physical activity. Stimulants such as caffeine were eliminated from her diet.
If all we can do in health care is reduce fear (for patients as well as providers), we will have eliminated many downstream effects. This was true in Maryann’s case. Her anxiety abated and she became less depressed and self-critical. She was still quite sensitive, of course, but her reaction to chemicals was reduced by 70 percent. The interactions between Maryann and her doctors involved an awareness that the words expressed during the appointment shaped how she faced her condition. In redefining how she perceived her situation, the conversation engaged her hopefulness, her self-esteem, and her ability to help herself. Ultimately, her new outlook enabled her to improve the quality of her life.
As research reveals more about how the mind and body are interconnected, the salutogenic approach could be an important addition to the training of health professionals and family caregivers. Recently I visited a campus to give a lecture to a group of health providers about the importance of interpersonal connections in treating patients and promoting health. The funny thing is, people often respond as if the healing power of interpersonal connections is a new idea. Or, perhaps more poignantly, they respond as if they’d once known it but had somehow forgotten.
In a lecture hall filled with students, I posed this question: “If you were going to assemble a health team to address a patient’s kidney failure, who would you recruit?” Hands shot into the air, and the students began suggesting a team of crackerjack specialists. “A nephrologist,” one student said. “A surgeon,” added another. “A dialysis nurse,” another person called out. “A dialysis machine technician,” said one more. “A pharmacist.” Soon we had assembled a list of specialists who could navigate through a kidney crisis, and in fact, the necessary team to keep an ailing patient alive.
Then I asked them: “If you were going to assemble a team to keep an individual healthy, who would you recruit?” The beginning of the list contained a few of the usual suspects: a primary care doctor, a nurse . . . But then the list began to evolve. “A psychologist,” one person said, “to help people deal with stress.” As they thought more about the steps involved in staying healthy, students added a nutritionist to the team, and a social worker, and a personal trainer. One student said, “A chaplain, or someone who could be a spiritual guide.”
Then a student added, “A clown.” A hesitant giggle rolled through the room as the student explained, “People feel better when they laugh.”
Suddenly the list grew in ways that took the students by surprise.
“A grandmother,” one said.
“A pet,” another added.
As the students began to build the “team,” taking into consideration all of the components that feel like health, a fundamental truth became clear: highly technical medical care is important when we need to deal with illness, but our well-being requires much more.
Health unites and disease segregates. Often people believe they need to be an expert or have a specialized degree to treat disease, but everyone can talk about health. Exploring it brings people together because they all have intuition as to what people need to become well. Often it is the children, the ones with the beginner’s mind, who see it most clearly. It is also important to realize that caregivers can’t become experts in salutogenesis without exploring and recruiting the nonphysical (spiritual, emotional, and meaningful) parts of others’ lives. But caregivers often treat just the physical aspects of disease because they live in the illusion that they can offer only physical cures.
To be truly healthy, people need care from those who can address and engage what’s at the core of their being. And to provide that care for others, to be “experts” in health and healing, caregivers will do better when they draw from skills beyond their book knowledge. Just like a child who knows how to offer a hug at exactly the right moment, they have the ability to draw from their own humanness. When they put those talents to use in a concerted and practiced way, they bring a much more powerful approach to health and self-healing.
Through the compassionate connection, caregivers are able to pull health from within. If they can encourage those whom they serve to find meaning and purpose and to connect to what they love, the body does all it can to heal.