When the Body Says No: The Cost of Hidden Stress (34 page)

The reader may recall from
chapter 1
the outraged letter from a rheumatologist in response to my article about Mary. I had suggested that Mary’s childhood experiences of abuse and abandonment had created a coping pattern of repression and that her scleroderma was an outcome, in part, of that history. The specialist stated that scleroderma was an inherited disease, and that my arguments had “no credibility.” She wrote, “This column has the effect of misinforming the lay public and falsely assigning responsibility for the development of scleroderma to the victims of this disease and to their families.” We can now see that “assigning responsibility”—by which the rheumatologist meant allocating blame—is not the issue. The central issue is the unintentional transmission of stress and anxiety across the generations.

Another patient of mine, Caitlin, also died with scleroderma. Her course was much more rapid than Mary’s, for she was dead less than a year after her diagnosis. I came to know Caitlin well only in her final months. Although I had delivered her children and remained their doctor, until her diagnosis with scleroderma she attended a female physician for her own medical problems.

Like Mary, Caitlin, too, was a kind and quiet soul with concern for everyone but herself. When she was asked how she was, her response was always accompanied by a warm, self-effacing smile that served to protect her listener from the physical and emotional pain she was
experiencing. She would quickly divert the conversation to some matter of personal interest to the other, away from her own troubles.

I will not forget my last conversation with Caitlin, at her hospital bedside. Her lungs and heart were barely functioning; she was less than twenty-four hours from her death. I asked how she felt. She immediately turned her attention to me, inquiring what was happening in
my
life. I related, with some disappointment, that a weekly medical column I had been writing for a local newspaper had been, just that morning, cancelled by the editors. “Oh,” she whispered, her face saddened with empathy, “how terrible that must be for you. You love writing so much.” On the threshold of death from a disabling disease at age forty-two, leaving four children and a husband, she uttered not a word about how terrible she may have been feeling herself.

“It was a long-standing part of her nature to be cheerful and always welcoming, regardless of whether she was sick or well,” her husband, Randy, told me in the course of a recent interview. According to Randy, Caitlin “bottled up a lot of emotion,” particularly when she was upset. There were two items she would rarely talk about: her terminal illness and her childhood. “If she mentioned her childhood at all, it would be about the few good times that she had.”

From Randy’s perspective, there was every indication that the good times in his wife’s childhood had been few and far between. Her father, a successful businessman, was a harsh and arbitrary taskmaster whose word was law. He was highly critical of Caitlin, the elder of the two children. “It seemed to me that she felt that when her parents conceived her, it was a great inconvenience. That she had come too soon and they really didn’t want her.”

That struck a chord with me. Caitlin had been a committed anti-abortion advocate but not the hostile or embittered kind. She knew that I supported women’s right to decide whether to continue or abort their own pregnancy. Because we had a mutually respectful relationship, she once wrote me to urge that I stop referring patients to abortion clinics. In that letter she said, “If abortion had been legal at the time when I was a fetus, I would have been aborted.” She had, said Randy, a deep feeling of not having been wanted.

Late in Caitlin’s illness, an incident occurred that, in the telling, brought tears to Randy’s eyes. “We were sitting here in the kitchen with
all those pills she was supposed to be taking. She was feeling miserable. All of a sudden she burst out crying. She said, ‘Oh, I wish I had a mother.’ And her mother lived only a few blocks away. They were not emotionally close enough that the mom would come and comfort her and help her or put her arms around her. We had a homemaker at the time. She was there, cleaning the fridge. She felt so touched that she came over and hugged Caitlin. I thought, What a shame—this person who hardly knows her has more empathy for her than her own mother.

“But I don’t want to blame the parents either. When you look at their family histories—well, her mother’s dad walked out on his family when she was a little girl. She didn’t have a dad, and her mom (Caitlin’s grandmother) had to struggle on all alone.”

Randy’s view of Caitlin’s childhood was confirmed in a subsequent interview with her brother. “There was little emotional support and love in the family,” the brother said. “Our father was mean to us, and our mother was afraid. My mother is a very nice person—a great person—but she would never deal with the issues.

“My father was just overbearing. I don’t think we could have been five or six years old when we were sent to the basement every Saturday to clean. We weren’t allowed to come up until it was done. While we were at it, we would polish my father’s army boots. They had to shine.”

Caitlin, her brother said, was “a pretty gentle soul,” but to her father “she was just stupid. The very fact that she went to university ticked him off. He had no respect for anything she did. She was in the La Leche League (a group that promotes breast-feeding). My father ridiculed that. ‘How long is she going to breast-feed those kids—until they are teenagers?’”

After putting up with years of feeling dominated, even as an adult, this brother finally broke with his father and refuses to talk him. “Caitlin was very concerned that I had got myself out of the family. She couldn’t understand why I had done that. I tried to tell her it was the best thing for me, that I was a better person for it. She didn’t get it.”

Caitlin’s brother, too, wept as he recounted an incident identical to the one Randy had related. “Caitlin said to my wife on her deathbed, the day before she died—it’s hard, those images—my wife sat with her and held her hand, and Caitlin said, ‘I wish I had a mother like you.
I don’t have a mother.’ I think the world of my mother, but she wasn’t a good mother. She wasn’t loving.”

The brother also revealed details of the family history that once more demonstrated the multigenerational nature of suffering. It was a shock to Caitlin and her brother to learn the truth of what had happened with their grandfather. An uncle who showed up for the funeral of Caitlin’s grandmother informed them that the grandfather had not died when Caitlin’s mother was a young child, which had been the family story, but had abandoned his wife and later divorced her.

All their lives, Caitlin and her brother had been told that their grandfather had passed away suddenly. “When we asked my mom what happened to her father, she always said, ‘He died when I was seven years old of a heart attack.’ Our grandmother had given us the same line. We were so upset because here was a grandmother whom we loved and thought the world of. To know the truth would have meant so much to us and to our relationship with her. But that’s the way it always was. In our family you don’t talk about difficult issues, you hide them.”

Such lies, however innocently intended, never protect a child from pain. There is something in us that knows when we are lied to, even if that awareness never reaches consciousness. Being lied to means being cut off from the other person. It engenders the anxiety of exclusion and of rejection. In Caitlin it could only have reinforced the perception of not being wanted that flowed from her father’s harshness and her mother’s emotional absence.

Less than a year preceding the onset of her scleroderma, Caitlin suffered a major rejection at the hands of her family, having to do with her exclusion from the family business. “My sister was never in the calculations,” her brother says. “It didn’t seem abnormal at the time.” Caitlin felt deeply hurt by the perceived rejection. She never brought up the matter to anyone, except to her brother shortly before her death. And she kept maintaining that he, the brother, should go back to the family. “She felt it was her obligation, her duty, to make things right. That would be the only thing Caitlin would do—to try to make things better.”

Caitlin had been assigned a certain role in the family system, a role bequeathed to her by generations of family history. Her own mother was deprived of attuned parenting from an early age, since we can surmise that the family’s problems did not begin the moment the grandfather
abandoned his wife and children. We may be equally sure that the harsh parenting by Caitlin’s father originated in his own troubled childhood. The combination of her parents’ many unmet emotional needs led to Caitlin’s desperation to make herself lovable and prepared her for the role of the kind, gentle, uncomplaining caregiver who never became angry and never asserted herself. That is how the child’s adaptive responses to perceived parental demand, if repeated often enough, become character traits.

Caitlin adopted her assigned role successfully, but at the cost of her own health. The price was a lifetime of stress. Her role, and her life, ended with a rapidly fatal autoimmune illness within one year of a deep rejection that she no longer had the resilience to deal with.

Hans Selye, the founder of stress research, developed the concept of
adaptation energy
. “It is as though we had hidden reserves of adaptability, or adaptation energy, throughout the body…. Only when all of our adaptability is used up will irreversible, general exhaustion and death follow.”
⁷
Aging, of course, is the normal process through which the reserves of adaptation energy become depleted. But physiologically stress ages us as well—as the language recognizes when people speak of “having aged overnight.” Throughout her lifetime, much of Caitlin’s adaptation energy had been diverted away from self-nurturing toward taking care of others. Her function had been determined by family dynamics during her childhood. By the time her illness struck, she had run out of energy.

Central to any understanding of stress, health and disease is the concept of
adaptiveness
. Adaptiveness is the capacity to respond to external stressors without rigidity, with flexibility and creativity, without excessive anxiety and without being overwhelmed by emotion. People who are not adaptive may seem to function well as long as nothing is disturbing them, but they will react with various levels of frustration and helplessness when confronted by loss or by difficulty. They will blame themselves or blame others. A person’s adaptiveness depends very much on the degree of differentiation and adaptiveness of previous generations in his family and also on what external stressors may have acted on the family. The Great Depression, for example, was a difficult time for millions of people. The multigenerational history of particular families
enabled some to adapt and cope, while other families, facing the same economic scarcities, were psychologically devastated.

“Highly adaptive people and families, on the average, have fewer physical illnesses, and those illnesses that do occur tend to be mild to moderate in severity,” writes Dr. Michael Kerr.

Children who become their parents’ caregivers are prepared for a lifetime of repression. And these roles children are assigned have to do with the parents’ own unmet childhood needs—and so on down the generations. “Children do not need to be beaten to be compromised,” researchers at McGill University have pointed out.
⁹
Inappropriate symbiosis between parent and child is the source of much pathology.

The child’s habitual adaptive responses to the family system give rise to the traits that, with time, become identified with her “personality.” We have noted that personality does not cause disease—stress does. If we may speak of a disease-prone personality, it is only in the sense that certain traits—in particular, the repression of anger—increase the amount of stress in an individual’s life. Now we see that concepts such as “the rheumatoid personality” or “the cancer personality” are misleading for yet another reason: they assume that an individual person is an isolated entity, not recognizing that he is situated in and shaped by a multigenerational family system. As Dr. Kerr suggests, it is much more illuminating to think of, say, a
cancer position
than a cancer personality. “The concept of a cancer personality, although certainly having some validity, is based in individual theories of human functioning. The concept of a cancer position is based in a systems theory of human functioning. In a family system the functioning of each person is influenced and regulated by the functioning of every other person.”
¹⁰

If individuals are part of a multigenerational family system, families and individuals are also parts of a much larger whole: the culture and society in which they live. The functioning of human beings can no more be isolated from the larger social context than can that of a bee in a hive. It is not enough, therefore, to stop at the family system as if it determined the health of its members without regard to the social, economic and cultural forces that shape family life.

Cancer and the autoimmune diseases of various sorts are, by and large, diseases of civilization. While industrialized society organized along the capitalist model has solved many problems for many of its members—such as housing, food supply and sanitation—it has also created numerous new pressures even for those who do not need to struggle for the basics of existence. We have come to take these stresses for granted as inevitable consequences of human life, as if human life existed in an abstract form separable from the human beings who live it. When we look at people who only recently have come to experience urban civilization, we can see more clearly that the benefits of “progress” exact hidden costs in terms of physiological balance, to say nothing of emotional and spiritual satisfaction. Hans Selye wrote, “Apparently in a Zulu population, the stress of urbanization increased the incidence of hypertension, predisposing people to heart accidents. In Bedouins and other nomadic Arabs, ulcerative colitis has been noted after settlement in Kuwait City, presumably as a consequence of urbanization.”
¹¹