When the Body Says No: The Cost of Hidden Stress (29 page)

Exhaustion
is the word that leapt to mind as a former patient of mine with ankylosing spondylitis described his life prior to the onset of his disease, and even after.

Robert is prominent British Columbia labour leader. I interviewed him in his office. A large and affable man in his late forties, Robert speaks with a resonant voice and a hearty humour. When he needs to turn his head to answer the phone or to look at you from a slightly different angle, he swivels his whole trunk. There is virtually no movement in his spine. “Everything’s frozen from my neck to my butt,” he says.

When he was twenty-five, Robert began experiencing pain in his heels, followed by twelve years of unremitting pain in the joints of his shoulders and collarbone. He went to doctors a few times but soon gave up. “They keep telling you it is this and that, or it is not this or that. They don’t give you anything for relief. What else are you going to do about it?” He finally saw a rheumatologist, following five years of pain in his hip and legs.

“I would favour my left leg to the point that I was lying in bed one night and my partner noticed that one leg was smaller than the other—the muscles had shrunk because I didn’t use it. Of course, she went into hysterics and made me go to the doctor.”

In the twelve years between the onset of his symptoms and his diagnosis, Robert never missed work. In many respects his story was typical. Every trade union official I’ve ever treated in my practice has been beyond overworked. The demands on their time have been enormous, to say nothing of the inherent stress in the job itself, with the constant conflict and the politics, the long unpredictable hours,
meetings, never-ending duties. “Our pension plans in the labour movement are very, very good,” says Robert. “The reason we have very good pension plans is that nobody lives to sixty-five to collect their pensions … or very few! That’s why the pension plan for those of us in the labour movement is so strong. Nobody ever retires.”

When his rheumatic disease began, Robert was travelling about 100,000 miles a year by air all over North America. In 1976, which he calls his worst year, he was on the road for a consecutive period of four and a half months. “Never saw home all that time. I was working on a strike in the southern U.S. because I was in an international union that didn’t have anybody with the skills needed. I was in Arkansas and Oklahoma and Georgia, working twelve to fourteen hours a day, six days a week.” He would sleep during “whatever time was left over.”

“What was going on in your personal life?”

“Wife, two kids. Labour movement work always kills marriages. I don’t know any of my friends still married to their original wives. There are guys that I started with in 1973—some are dead, but some have had two or three, and one guy has had five marriages! This work just chews them up and spits them out.

“You’re never there and never contribute. I feel bad about it now. At the time I was too stupid to feel bad about it. I didn’t recognize what I had. I’ve got a close relationship with my kids now—they’re grown up. I don’t remember my son very much when he was a teenager and when he was a little child; well, I’ve got photographs. I didn’t even know I had a daughter until she was twenty.

“I don’t think I questioned it, because everybody else was doing the same thing. It was just part of the culture. Dead marriages and booze were just common. I was the first one in my peer group to stop drinking.”

Robert says he has an addictive personality. “Not just to work. Booze, drugs, women, gambling—the whole nine yards. I haven’t had a drink since September 2, 1980, at 7:40 p.m. That was the last time I had a beer. I got tired of waking up on the floor with my tongue stuck to the carpet and feeling like a bag of shit. I’ve also quit smoking 132 times. Problem is, I’ve started 133 times. That’s the one addiction I haven’t been able to break.”

What drew Robert to union organizing, and what still keeps him committed to it, is the opportunity to improve people’s lives and to
work for a more fair, more equitable society. “That’s why you never say no. There’s always so much more to be done. The list of injustices never gets any shorter. I feel very fortunate to be able to contribute to making this a better world.”

Robert has now developed the capacity to say no to excessive demands. Interestingly—and perhaps not coincidentally—he also finds that his ankylosing spondylitis, with the complete fusion of his ribs and his vertebrae, has conferred an unexpected benefit in emotional expression.

“I have an advantage over others in terms of expressing anger. I have a command of the language. I never shout at anybody. I don’t have to shout because I can put words right through you just by controlling my breathing. One of the good things about AS is that freezes your ribs, so your ribs are locked in front and back.” Robert explains that when people become upset and lose control of their angry responses, they breathe in a very shallow fashion, using the muscles between the ribs to inflate the chest cavity and thus to draw air into the lungs. Because of his AS, he is unable to do that.

“In order to have a stronger voice and more control over the way you speak, you have to breathe with your diaphragm.
You
don’t breathe there—you breathe shallowly and your ribs move in and out.
My
gut goes up and down because I have to breathe with my diaphragm. There’s much more muscle control in the diaphragm than there is over top of the ribs.” It also affords better emotional control and ensures improved oxygen supply to the thinking parts of the brain.

“Before, I had to work at it. As my ribs froze up, I didn’t have any choice.”

“That’s most interesting. Teachers of yogic breathing are always telling us to breathe using the diaphragm. That’s the healthy thing to do. Your AS forced you to do that.”

“It gives me the power of clarity. You can tell if most people are angry because they shout at you. That’s the way, verbally, they can express that they’re angry. With my breathing the way it is, I have to speak in shorter sentences, and I can clip words and project my voice rather than yell. Controlling your breathing allows you to control your temper and your anger—and by controlling I mean using it to get to where you want to go.”

As Robert spoke, I was struck by the uncanny ability of nature to teach through adult disease lessons that, in a better world, should be learned in childhood and in health.

One study pointed to the intriguing possibility that even the painful inflammation of rheumatoid arthritis could serve a protective function: joint tenderness was significantly related to a
decrease
in stressful events one week later. “The results have important clinical implications,” the researchers concluded.” The dynamic interplay between social-conflict events and joint pain describe a homeostatic system in which negative social interaction is regulated through worsening of the disease.
¹⁶

In other words, the flare-up of disease forced patients into avoiding stressful interactions. The body says no.

  A
PATIENT OF MINE, A CHILD
seven years old, was scheduled for cardiac surgery at British Columbia Children’s Hospital. She had already undergone two earlier operations for a congenital heart defect. Her parents were well familiar with the routine and wanted one of the rules of the operating room changed. Previously their daughter had been emotionally upset and struggled when she found herself strapped to the stretcher, surrounded by strangers wearing masks, her arm forcibly held as an intravenous catheter was inserted. This time they wished to stay with her until the anaesthetic took effect and she was fully asleep. Although the hospital staff believed that if parents were present the child would be clingy and all the more recalcitrant, they did relent. The anaesthetic procedure was effected without difficulty.

The traditional hospital practice of excluding parents ignored the importance of attachment relationships as regulators of the child’s emotions, behaviour and physiology. The child’s biological status would be vastly different under the circumstances of parental presence or absence. Her neurochemical output, the electrical activity in her brain’s emotional
centres, her heart rate, blood pressure and the serum levels of the various hormones related to stress would all vary significantly.

Life is possible only within certain well-defined limits, internal or external. We can no more survive, say, high sugar levels in our bloodstream than we can withstand high levels of radiation emanating from a nuclear explosion. The role of self-regulation, whether emotional or physical, may be likened to that of a thermostat ensuring that the temperature in a home remains constant despite the extremes of weather conditions outside. When the environment becomes too cold, the heating system is switched on. If the air becomes overheated, the air conditioner begins to work. In the animal kingdom, self-regulation is illustrated by the capacity of the warm-blooded creature to exist in a broad range of environments. It can survive more extreme variations of hot and cold without either chilling or overheating than can a coldblooded species. The latter is restricted to a much narrower range of habitats because it does not have the capacity to self-regulate the internal environment.

Children and infant animals have virtually no capacity for biological self-regulation; their internal biological states—heart rates, hormone levels, nervous system activity—depend completely on their relationships with caregiving grown-ups. Emotions such as love, fear or anger serve the needs of protecting the self while maintaining essential relationships with parents and other caregivers. Psychological stress is whatever threatens the young creature’s perception of a safe relationship with the adults, because any disruption in the relationship will cause turbulence in the internal milieu.

Emotional and social relationships remain important biological influences beyond childhood. “Independent self-regulation may not exist even in adulthood,” Dr. Myron Hofer, then of the Departments of Psychiatry and Neuroscience at Albert Einstein College of Medicine in New York, wrote in 1984. “Social interactions may continue to play an important role in the everyday regulation of internal biologic systems throughout life.”
¹
Our biological response to environmental challenge is profoundly influenced by the context and by the set of relationships that connect us with other human beings. As one prominent researcher has expressed it most aptly, “Adaptation does not occur wholly within the individual.”
²

Human beings as a species did not evolve as solitary creatures but as social animals whose survival was contingent on powerful emotional connections with family and tribe. Social and emotional connections are an integral part of our neurological and chemical makeup. We all know this from the daily experience of dramatic physiological shifts in our bodies as we interact with others. “You’ve burnt the toast again,” evokes markedly different bodily responses from us, depending on whether it is shouted in anger or said with a smile. When one considers our evolutionary history and the scientific evidence at hand, it is absurd even to imagine that health and disease could ever be understood in isolation from our psychoemotional networks. “The basic premise is that, like other social animals, human physiologic homeostasis and ultimate health status are influenced not only by the physical environment but also by the social environment.”
³

From such a
biopsychosocial
perspective, individual biology, psychological functioning and interpersonal and social relationships work together, each influencing the other.

Joyce is a forty-four-year-old professor of applied linguistics. Self-imposed stress, she has noticed, is a major factor in the onset of her asthmatic symptoms. “I think every time I’ve had an episode, it’s been when I’ve taken on more than I can handle. Even though I think I can handle it, somehow my body is saying that I can’t.

“I’ve been a faculty member at the university for a decade. For a number of years I was the only female. Now it has actually changed; I feel my efforts have paid off. There are four women now, which is good, but internally I always had to take on a lot of things. I had to prove myself. They’d never tenured a woman in my department. There was a climate that wasn’t that conducive to women’s ideas or women professors.

“I was internalizing a lot of ‘shoulds.’ It was very hard. Not being able to say no was my issue. For me to say no would mean an incredible emptiness, which I was scared about. I’ve done a lot of things just to fill up the emptiness.”

During this past autumn and winter, Joyce’s asthma has been particularly troublesome. She has had to use higher than the usual doses of inhaled medications to open the airways and to counteract the inflammation in her lungs. “I realize my illness is making me say no. As part
of an exchange I was to be going to Baltimore, and I said, ‘No, I can’t go.’ That’s happened other times. I’ve cancelled things, saying, ‘I have an asthma attack, so I can’t do it.’ I’m still hiding behind something. I’m not willing to just say, ‘I won’t do it.’”

In asthma, from the Greek root “breathe hard,” there is a reversible narrowing of the bronchioles, the small airways in the lungs, because the muscle fibres that encircle them begin to tighten. At the same time, the lining of the bronchioles becomes swollen and inflamed. All the various components of the PNI apparatus are involved in asthma: emotions, nerves, immune cells and hormones. Nervous discharges can narrow the airways in response to many stimuli, including emotions. The immune system is responsible for inflammation of the bronchiolar lining, the other characteristic feature of asthma. Swelling of the airway lining and the accumulation of inflammatory debris in the bronchioles are the final consequences.

It is not inhalation but the outflow of air from the narrowed bronchioles that is impaired in asthma. The asthmatic has difficulty exhaling and feels his chest begin to tighten. The lungs attempt to clear the clogged airways by activating the cough reflex. In acute episodes, the laboured exhalations produce the well-known wheezing noise from the narrowed bronchioles, as from lips puckered for whistling. In milder cases, the only symptom may be an irritating cough. For some people asthma is chronic, while others experience it only intermittently.