GLOBE AND MAIL
Saturday, March 8, 2003

The Woman Who Never Got Mad
by Gabor Maté


Bottling up your anger can be fatal, writes GABOR MATÉ, who believes that suppressing such an emotion can trigger malignancy and immune mutiny. Take the case of Caitlin, a 'pretty gentle soul' who died of scleroderma at 42

A patient of mine, Caitlin, died within a year of her diagnosis with scleroderma, an autoimmune disease. In scleroderma, from the Greek word meaning "hardened skin," the immune system turns against the body, damaging the connective tissues. There is stiffening of the skin, esophagus, heart and tissues in the lungs and elsewhere.

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 Caitlin attended a female physician.

Caitlin was a kind and quiet woman 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.

I will not forget my last conversation with Caitlin, at her hospital bedside. Her lungs and heart were barely functioning; she was less than 24 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 the age of 42, 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.

From Randy's perspective, 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 abort their pregnancies. She once wrote me to urge that I stop referring patients to abortion clinics. She wrote, "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.

Scleroderma is one of the rheumatoid diseases, along with rheumatoid arthritis, systemic lupus and many other conditions in which the chief targets of immune mutiny are the joints and connective tissues. In other autoimmune diseases, the bowels or the nerves or the liver or the brain may be the points of attack, resulting in inflammation in almost any part of the body. The immune cells run wild, as if an army ransacked and devastated the country it was meant to defend.

What induces the immune system's suicidal rebellion? In the first edition of his classic Principles and Practice of Medicine,published in 1892, the great Canadian physician William Osler suggested that rheumatoid arthritis has "a nervous origin." He was referring to emotional stress. He noted "the association of the disease with shock, worry, and grief." No obscure theoretician, Dr. Osler was the best-known medical doctor in the English-speaking world.

Now, at the beginning of the 21st century, one may search in vain through the mainstream medical texts for mention of stress in relationship to rheumatoid arthritis or to its fellow autoimmune conditions. The almost willful failure of mainstream medical practice to recognize the role stress plays in the initiation of autoimmunity is tragic for millions of sufferers.

It is now known that the immune system does not function in isolation. It is part and parcel of a super-system to which also belong the brain centres that process emotion, the nervous system and the hormone-secreting glands. Whatever happens in one part of the super-system also affects the other parts.

For this reason, people who in childhood had to develop the emotional coping style of suppressing their emotions, particularly anger, are at increased risk for immune system failures, including malignancy or immune mutiny.

This is not surprising, given that anger and the immune system have the same function in animal life -- to defend the organism's boundaries against invasion.

A trait common to many people with rheumatoid illness, for example, is a stoicism carried to an extreme, a deeply ingrained reticence about seeking help. Researchers have called this trait a compensating hyperindependence. It is a pseudo-independence, a pretense. It is the coping mechanism of a child who feels emotionally alone and survives by telling herself, and the world, that she has no needs that she cannot take care of herself.

Such patients, for no fault of their own, are also characterized by perfectionism, a fear of their own anger impulses and strong feelings of inadequacy.

Research has found that the childhoods of people with autoimmune illness are often marked by loss -- either the departure or the death of a parent, or a profound sense of emotional abandonment.

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," Randy continued. "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."

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 to him. "Caitlin was very concerned that I had got myself out of the family. 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."

The brother also revealed details of the family history that once more demonstrated the multigenerational nature of stress and 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. "But that's the way it always was. In our family, you don't talk about difficult issues, you hide them."

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.

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 gentle, uncomplaining caregiver who never became angry or asserted herself. That is how the child's adaptive responses to 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, which, finally, helped induce her immune system to turn against her own body.

Czech-Canadian physician and scientist 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."

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.

The Power of No


People usually think of stress as external problems -- a bad boss, financial loss, the illness of a loved one.

Powerful as those factors may be in their harmful effects, the most important stressors in our lives are generated from within. They are the hidden stressors embedded in our habitual coping patterns, in the unconscious and automatic ways we conduct our relationships with the world at large and with the ones close to us.

How to cope with stress, then?

Stress reduction is no easy matter in a society that values human beings according to their productivity above all else, but it has to begin with recognizing the degree of self-rejection we are all prone to.

The difficulty so many of us have in setting our boundaries, in saying no, is a prime marker of that self-rejection. People need to ask themselves some of the following questions, and many others: Do I have trouble saying no? Do I take responsibility for the feelings of others before considering my own? Am I able to feel anger? Am I able to communicate anger in healthy, non-destructive way?

Our culture is addicted to simple self-help solutions and "positive thinking." We need much more "negative thinking," that is, the courage to look at what does not work for us and why. That is the first necessary step in dealing with stress.

BACK

 

Now comes Gabor Maté , an insightful, no-nonsense, and thoroughly compassionate physician who provides an overview of all these perspectives and comes to the marvelously humane conclusion that ADD/ADHD is neither nature (genetics) nor nurture (parenting/environment) but, rather, the result of the collision of a predisposing nature with an ADD-hostile life situation, family, school, or job. How refreshing!

-Thom Hartman, author of ADD: A Different Perception and many other books about ADD

 

 

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Gabor MatÈ, M.D.