When the Body Says No: The Cost of Hidden Stress (4 page)

The living conditions were bad. “We had an outhouse, and in −40 or −50 degree weather, that’s awful. Then he conceded and got a honey bucket, as they called it, that I could pee into at night because women have to pee more than men, right?”

“That was a concession?” I inquire.

“Yes, right. We had to cart it away to dump it, and he didn’t want to do that. One night he chucked it out in the snow and told me to use the outhouse. I also had to carry the water—we had no running water. There was no option. If I wanted to stay with him, I had to put up with that.

“I remember saying the main thing I wanted from him was respect. I don’t know why, but that was the big thing for me. I wanted that so badly I was willing to put up with a lot.”

Lois says that a desperate need for approval had characterized her earlier life as well, especially her relationship with her mother. “I transferred to him my mother always being in control of my life … telling me what
to wear and decorating my room and telling me what I should do from the beginning. I was the little girl too good to be true. It means that you subjugate your own wants or needs in order to get approval. I was always trying to be who my parents wanted me to be.”

Barbara, a psychotherapist—by reputation, a highly effective one—treats many people with chronic illness. She herself has multiple sclerosis. She strenuously objects to the suggestion that repression originating in her childhood experience has anything to do with the plaques of inflammation and scarring at the root of her MS symptoms.

Barbara’s multiple sclerosis presented eighteen years ago. The first symptoms erupted shortly after she invited a sociopathic man she had worked with at a correctional facility into her home for a two-week stay. “He had done a lot of therapy,” she says, “and the idea was to give him a fresh chance.” Instead, the client caused havoc and disruption in her home and her marriage. I ask Barbara if she does not see this invitation to a seriously troubled person as having represented a major boundary problem on her part.

“Well, yes and no. I thought it was fine, because it was a two-week deal. But I would never do it again, obviously. I’m so good on boundaries now that I have one client who calls me the boundary queen—and she is another therapist, so we joke about it. Unfortunately, I had to learn the hard way. Sometimes I think that my MS was a punishment for my foolishness.”

This reference to disease as punishment raises a key issue, since people with chronic illness are frequently accused, or may accuse themselves, of somehow deserving their misfortune. If the repression/stress perspective truly did imply that disease was punishment, I would agree with Barbara’s rejection of it. But a search for scientific understanding is incompatible with moralizing and judgment. To say that an ill-advised decision to invite a potentially harmful person into one’s home was a source of stress and played a role in the onset of illness is simply to point out a relationship between stress and disease. It is to discuss a possible consequence—not as punishment but as physiological reality.

Barbara insists she had nothing but a mutually loving and healthy relationship with her parents. “My mother and I were great together. We were always very close.”

“Boundaries are learned in our formative years,” I say. “So why did you have to learn boundaries later, the hard way?”

“I knew boundaries, but my mother did not. That’s what most of our fights were about—about her inability to recognize where she ended and I began.”

Barbara’s introduction of an unstable and dangerous man into her home would be defined in studies as a major stressor, but the chronic stress of poor boundaries that preceded it is not so easily identified. The blurring of psychological boundaries during childhood becomes a significant source of future physiological stress in the adult. There are ongoing negative effects on the body’s hormonal and immune systems, since people with indistinct personal boundaries live with stress; it is a permanent part of their daily experience to be encroached upon by others. However, that is a reality they have learned to exclude from direct awareness.

“The cause, or causes, of multiple sclerosis remain unknown,” notes a respected textbook of internal medicine.
⁷
Most research refutes a contagious origin, although a virus may possibly be indicated. There are probably genetic influences, since a few racial groups do seem to be free of it—for example, the Inuit in North America and the Bantus of southern Africa. But genes do not explain who gets the disease or why. “While it is possible to inherit a genetic susceptibility to MS,
it is not possible to inherit the disease
,” writes the neurologist Louis J. Rosner, former head of the UCLA Multiple Sclerosis Clinic. “And even people who have all the necessary genes do not necessarily get MS. The disease, experts believe, must be triggered by environmental factors.”
⁸

Complicating matters are MRI studies and autopsies that identify the characteristic signs of demyelination in the central nervous system of persons who never exhibited any overt signs or symptoms of the disease. Why is it that some people with these neuropathological findings escape the frank development of illness while others do not?

What could be the “environmental factors” alluded to by Dr. Rosner?

Dr. Rosner’s otherwise excellent primer on multiple sclerosis summarily dismisses exploration of emotional stress as contributing factor to the onset. Instead, he concludes that the disease is probably best explained by autoimmunity. “A person becomes allergic to his own tissue,” he explains, “and produces antibodies that attack healthy cells.” He ignores
the abundant medical literature linking autoimmune processes themselves to stress and personality, a vital link to be explored more fully in later chapters.

A 1994 study done in the Department of Neurology at the University of Chicago Hospital looked at nervous system–immune system interactions and their potential role in multiple sclerosis.
⁹
Rats were used to demonstrate that artificially induced autoimmune disease would worsen when the flight-or-fight response was blocked. Had it not been interfered with, the animals’ ability to respond normally to stress would have protected them.

The MS patients described in the stress literature, and all the ones I interviewed, have been placed in positions akin to that of the unfortunate laboratory animals in the Chicago study: they were exposed to acute and chronic stress by their childhood conditioning, and their ability to engage in the necessary flight-or-fight behaviour was impaired. The fundamental problem is not the external stress, such as the life events quoted in the studies, but an environmentally conditioned helplessness that permits neither of the normal responses of fight or flight. The resulting internal stress becomes repressed and therefore invisible. Eventually, having unmet needs or having to meet the needs of others is no longer experienced as stressful. It feels normal. One is disarmed.

Véronique is thirty-three; she was diagnosed with MS three years ago. “I had a major episode,” she relates, “which I didn’t know was an episode … pain in my feet, numbness and tingling going all the way up to about the upper chest and then back down, over about three days. I thought it was cool—I was poking myself and couldn’t feel anything! I didn’t say anything to anybody.” A friend finally convinced her to seek medical help.

“You had numbness and pain from your feet to your upper chest and you didn’t tell anybody? Why is that?”

“I didn’t think it was worth telling anybody. And if I told somebody like my parents, they would be upset.”

“But if someone else had numbness and pain from the feet up to the mid-chest, would you ignore it?”

“No, I would rush him to the doctor.”

“Why were you treating yourself worse than you would another person? Any idea?”

“No.”

Most instructive is Véronique’s response to the question about any possibly stressful experiences prior to the onset of her multiple sclerosis. “Not necessarily bad things,” she says.

“I’m an adopted child. Finally, after fifteen years of pressure from my adoptive mom, I looked up my biological family, which I didn’t want to do. But it’s always easier to give in to my mom’s demands than argue about it—always!

“I found them and met them, and my very first impression was, Ugh, we can’t possibly be related. It was stressful for me to find out about my family history because I didn’t need to know that I was possibly a child of incestuous rape. That’s how it appears; nobody’s telling the whole story, and my biological mother won’t say anything.

“Also at that time I was unemployed, waiting for EI, on welfare. And I’d kicked out my boyfriend a few months before this, because he was an alcoholic and I couldn’t handle that any more either. It wasn’t worth my sanity.”

Such are the stresses this young woman describes as not necessarily bad: ongoing pressure from her adoptive mother, who ignored Véronique’s own wishes, to find and reunite with her dysfunctional biological family; discovering that her conception may have been the result of incestuous rape (by a cousin; Véronique’s biological mother was sixteen at the time); financial destitution; her break with an alcoholic boyfriend.

Véronique identifies with her adoptive father. “He’s my hero,” she says. “He was always there for me.”

“So why didn’t you go to him for help when you felt pressured by your mother?”

“I could never get him alone. I always had to go through her to get to him.”

“And what did your father do with all this?”

“He just stood by. But I could tell he didn’t like it.”

“I’m glad you feel close to your dad. But you may wish to find yourself a new hero—one who can model some self-assertion. In order to heal, you may wish to become your own hero.”

____

The gifted British cellist Jacqueline du Pré died in 1987, at the age of forty-two, from complications of multiple sclerosis. When her sister, Hilary, wondered later whether stress might have brought on Jackie’s illness, the neurologists firmly assured her that stress was not implicated.

Orthodox medical opinion has shifted very little since then. “Stress does not cause multiple sclerosis,” a pamphlet recently issued by the University of Toronto’s MS clinic advised patients, “although people with MS are well advised to avoid stress.” The statement is misleading. Of course stress does not
cause
multiple sclerosis—no single factor does. The emergence of MS no doubt depends on a number of interacting influences. But is it true to say that stress does not make a major contribution to the onset of this disease? Research studies and the lives of the persons we have looked at strongly suggest that it does. Such also is the evidence of the life Jacqueline du Pré, whose illness and death are a virtual textbook illustration of the devastating effects of the stress brought on by emotional repression.

People often wept at du Pre’s concerts. Her communication with audiences, someone remarked, “was quite breathtaking and left everyone spellbound.” Her playing was passionate, sometimes unbearably intense. She blazed a direct path to the emotions. Unlike her private persona, her stage presence was completely uninhibited: hair flying, body swaying, it was more typical of rock ‘n’ roll flamboyance than of classical restraint. “She appeared to be a sweet, demure milkmaid,” an observer recalled, “but with cello in hands she was like one possessed.”
¹⁰

To this day some of du Pré’s recorded performances, notably of the Elgar cello concerto, are unsurpassed—and are likely to remain so. This concerto was the eminent composer’s last major work, created in a mood of despondency in the wake of the First World War. “Everything good and nice and clean and fresh and sweet is far away, never to return,” Edward Elgar wrote in 1917. He was in his seventh decade, in the twilight of his years. “Jackie’s ability to portray the emotions of a man in the autumn of his life was one of her extraordinary and inexplicable capacities,” writes her sister, Hilary du Pré, in her book,
A Genius in the Family.
¹¹

Extraordinary, yes. Inexplicable? Perhaps not. Although she was unaware of it, by the time she was twenty, Jacqueline du Pré was also in the autumn of her life. The illness that was soon to end her musical
career was only a few years away. Regret, loss and resignation had all been too abundantly a part of her unspoken emotional experience. She understood Elgar because she had partaken of the same suffering. His portrait always disturbed her. “He had a miserable life, Hil,” she told her sibling, “and he was ill, yet through it all he had a radiant soul, and that’s what I feel in his music.”

She was describing herself, from her earliest beginnings. Jackie’s mother, Iris, suffered the death of her own father while she was still in the maternity hospital with Jackie. From then on, Jackie’s relationship with her mother became one of symbiotic dependence from which neither party could free herself. The child was neither allowed to be a child nor permitted to grow up to be an adult.

Jackie was a sensitive child, quiet and shy, sometimes mischievous. She was said to have been placid, except when playing the cello. A music teacher recalls her at age six as having been “terribly polite and nicely brought up.” She presented a pleasant and compliant face to the world. The secretary at the girls’ school Jackie attended remembers her as a happy and cheerful child. A high-school classmate recalls her as a “friendly, jolly girl who fitted in well.”

Jackie’s inner reality was quite different. Hilary recounts that her sister burst into tears one day: “No one likes me at school. It’s horrible. They all tease me.” In an interview Jacqueline portrayed herself as “one of those children other children can’t stand. They used to form gangs and chant horrid things.” She was an awkward youngster, socially gauche, with no academic interests and little to say. According to her sister, Jackie always had difficulty expressing herself in words. “Observant friends noted an incipient strain of melancholy underneath Jackie’s sunny exterior,” writes her biographer, Elizabeth Wilson, in
Jacqueline du Pré.
¹²