OTTAWA CITIZEN
Sunday, March 16, 2003
Page: C3
Section: The Citizen's Weekly


WHEN THE BODY SAYS NO: This B.C. doctor insists that emotional repression and psychological stress play a powerful role in the onset of chronic illness

By Shelley Page

New York Yankees first baseman Lou Gehrig was known as the Iron Horse because he refused to pull himself from the lineup regardless of injury or illness. In the 1930s, Gehrig set a record for consecutive games played -- 2,130 -- that would stand for six decades.

When his hands were X-rayed it was found that every one of his fingers had been broken, some more than once. He had sustained 17 fractures. Someone once described Gehrig "grinning crazily as a macabre dancer in a gruelling marathon."

While Gehrig was known for his refusal to quit, years later, he also became known as the most famous person to be felled by ALS or amyotrophic lateral sclerosis, a degenerative, muscle-wasting disease. ALS became known as "Lou Gehrig's disease."

According to Vancouver physician and bestselling author Dr. Gabor Maté, those who develop Lou Gehrig's disease share more in common with its namesake than just the illness. ALS patients the world over are frequently described as the "nicest people you could ever meet," says Maté.

Like Gehrig, they never complain, don't say a bad word about anyone, never admit or confront any fear, anxiety or sadness in their lives. Maté, who met many ALS patients working as the director of palliative care at Vancouver General Hospital, found that they never asked for help or admit to emotional or physical pain.

Instead, Maté claims they always tried to be cheerful. Even in the face of death, his patients spoke "casually of their deterioration or did so with engaging smiles."

In his just-published book, When The Body Says No: The Cost of Hidden Stress, Maté wondered if his observations could be supported in the scientific literature. What he found -- albeit not a lot -- convinced him that something about ALS patients' emotional-coping style might trigger their illnesses.

"Why Are Patients with ALS So Nice?" was the title of a paper presented by neurologists from the Cleveland Clinic at an international symposium in Munich a few years ago. Technologists conducting diagnostic testing on people suspected of having ALS would sometimes write "This patient cannot have ALS, he (or she) is not nice enough ... "

A 1970 study of 10 ALS patients said "hard, steady work without recourse to help from others was pervasive."

In Maté's book, he attempts to show that continuing emotional repression and psychological stress play a powerful role in the onset of chronic illness. In his more than two decades of medical practice, he noticed that those patients who developed cancers and chronic illnesses, such as the autoimmune diseases rheumatoid arthritis, scleroderma, lupus, as well as asthma, multiple sclerosis, and bowel disorders, have lived lives of excessive stress, often invisible to the individuals themselves. From an early age, many of them developed a psychological coping style that kept them out of touch with the signs of stress. They suppressed any negative emotions, especially anger, which triggered biochemical processes -- or a predisposition to a certain illness -- that led to illness.

Maté first received international attention for his bestselling book Scattered Minds, in which he argued that attention deficit disorder was not a "biological disease" to be treated solely with medication, but a result of a frenetic society and unhealthy social circumstances.

With When the Body Says No, he follows the same path, this one more well-travelled, but dangerous. Numerous authors before him have written about the so-called mind-body connection, everyone from Dr. Bernie Siegel in his groundbreaking Love, Medicine and Miracles, to more obscure works, such as the recent Irritable Bowel Syndrome and the MindBodySpirit Connection by William Salt. There are newsletters devoted to the topic, such as Mind Body & Soul. Type "mind body connection" into Google and you get more than 1.2 million hits.

Attempts to connect personality to coping styles have run into all sorts of criticism, especially linking cancers to what has been dubbed the "type C" personality -- passive, emotionally inexpressive, conforming and unassertive.

In Illness as Metaphor (1978), Susan Sontag famously wrote, "such preposterous and dangerous views manage to put the onus of the disease on the patient and not only weaken the patient's ability to understand the range of plausible medical treatment but also, implicitly, direct the patient away from such treatment.

"Cure is thought to depend principally on the patient's already sorely tested or enfeebled capacity for self-love."

Many of these mind-body books have been lumped together in what is known as the "blame the patient" movement.

Maté is well aware that he may be criticized for "blaming" the ill for their bad health, but he says he hopes to force both patients and their doctors to confront the western style of medicine, which scrupulously ignores emotional influences. "Not all aspects of illness can be reduced to facts verified by double-blind studies and by the strictest scientific techniques."

In the interests of full disclosure, it's important to say I approached Maté for an interview with both trepidation and curiosity. Having suffered from an autoimmune disease for 20 years, I don't like to think this has been a hell of my own making, or of my parents' making. There are more palatable culprits: some as yet undiscovered genes or a mystery virus that caused the immune system to turn against the body.

Still, I felt he was correct to some degree. Before being diagnosed with lupus, a disease that would eventually attack my brain, heart, lungs, kidneys, muscles and joints, I lived a life of chronic stress. Obsessive studying in university; participation at an elite level in basketball; far too many extracurricular activities; too many parties; and an over-arching pressure on myself to succeed in everything.

When I was diagnosed, my Vancouver-based rheumatologist didn't ask about any of this, he just gave me fistfuls of Prednisone and sent me packing. I remember begging my mother every day to drive me to my first daily newspaper job, despite my slow, rigid gait, shortness of breath and tear-inducing chest pain: I never took a sick day. Later, a social worker pointedly said: "Your problem is you want to play all of the strings of your violin at once." Those words haunt me, and it took years to come to terms with the truth of that statement, and much longer to figure out how to not to be that way.

Maté, as have others before him, talks about people who "die of loneliness," or of a sadness that "eats someone to death." I could be a metaphor for an autoimmune disease: my own harshest critic, my immune system began to attack myself.

Surveys of chronically ill people and cancer patients show that many develop their own personal scenarios linking stressful life events to their initial diagnoses. A recent study found that 42 per cent of breast-cancer patients believed their disease was caused, at least in part, by "stress."

But most medical professionals -- and numerous patients' rights advocates -- have been very critical of this "blame the patient" movement, contending that while there may be some mind and body interaction, it is far more complex than is now understood, and that emotional harm can result from simplistic theories of causality, thoughtlessly applied.

I found this excerpt from Advanced Breast Cancer: A Guide to Living with Metastatic Disease (1998), which summed up many medical professionals' view: "While all sorts of fanciful theories abound, and have since recorded history began, it's important to remember that despite decades of research, no one has yet proven that traumatic events cause cancer or worsen prognosis, or that certain kinds of people are more prone."

I approached Maté certain about two things. Almost everyone I know represses their emotions, particularly anger, and most of them seem healthy. In fact, I count among my friends many thriving passive-aggressives. However, I, like many other patients, have a "gut" feeling that there is more to many illnesses than simply a mysterious biomechanical malfunctioning, and perhaps chronic stress or some other psychological component is a necessary ingredient.

On the phone from Vancouver, Maté speaks quickly and mumbles often. He does not seem as self-assured as he comes across in the book. There is a sweetness to him. When he talks of the "wonderful, lovely" patients he watched die, he grows even quieter. More than once during the interview, we'll slide into my own circumstances. His compassion and concern are touching.

A family physician for more than 20 years, Maté, 59, was the medical co-ordinator of the Palliative Care Unit at Vancouver General Hospital. He is also staff physician at a facility for street people in Vancouver's downtown eastside. He was a long-time columnist for the Vancouver Sun and the Globe and Mail.

He is both a survivor and a child of Nazi genocide, having lived most of his first year in Budapest under Nazi occupation. His maternal grandparents were killed in Auschwitz when he was five months old; his aunt was deported and was never again heard from; his father was in a forced labour battalion in the service of the German and Hungarian armies. His mother and he barely survived their months in the Budapest ghetto.

His mother suffered inhuman stresses, and he says she "was rarely up to the tender smiles and undivided attention a developing child in fact requires to imprint a sense of security and unconditional love in his mind." On many days, his mother only got out of bed in order to care for her son.

"I learned early that I had to work for attention, to burden my mother as little as possible and that my anxiety and pain were best suppressed," he writes in his book.

This created a lifelong pattern of both needing to overachieve for attention, while at the same time hiding his pain and suffering from others, particularly his mother. As an adult, he was diagnosed with attention deficit disorder. Even when he was writing this book, he marvelled at how he subconsciously stopped limping when going to visit his mother, in order to hide an injury so she wouldn't worry.

In his life as a doctor, Maté has always been fascinated by the psychological roots of illness. His book relates many haunting and tragic stories about his patients.

He writes of Joyce, who describes how a recent asthma flare-up occurred after a family get-together that brought up emotions of fright and suppressed anger from her childhood.

"We all had dinner together. (My brother) just went over the top --critical, angry, directed at me. I woke up Monday morning and couldn't talk, couldn't walk, couldn't do anything," she recalled.

Maté writes of ill patients who describe having happy childhoods. Then he quizzes them, only to find they had made themselves "numb" to a destructive family dynamic.

Iris, who suffered from autoimmune disease, "disappeared" and went into a fantasy world whenever her father unleashed his temper.

"I couldn't talk to my mother because I didn't want her to know I was unhappy, for one thing. For another, she didn't really exist as a separate entity apart from my father. She was a neutral person ... I was numb, but on the other hand I was quite happy in my numbness."

"Oh?" he asked.

"I played with dolls ... OK, never mind about that, I was going to say I chewed dolls."

"What do you mean?"

"I'd chew their fingers and toes."

She was mutilating them in her suppressed rage, Maté offered.

Knowing he may be accused by critics of engaging in psycho-babble, Maté mined data bases for "scientific proof" to support his thesis. He also focused on the new science of psychoneuroimmunology.

He describes his correspondence with Noel Hershfield, a professor of medicine at the University of Calgary, who said the new discipline "has now matured to the point where there is compelling evidence, advanced by scientists from many fields, that an intimate relationship exists between the brain and the immune system ... An individual's emotional makeup, and the response to continued stress, may indeed be causative in the many diseases that medicine treats but whose (origin) is not yet known." Hershfield goes on to name the vast majority of rheumatic disorders, inflammatory bowel disorders, diabetes, multiple sclerosis and others.

Maté writes that stress is a complicated cascade of physical and biochemical responses to powerful emotional stimuli. Physiologically, emotions are themselves electrical, chemical and hormonal discharges of the nervous system. Emotions influence -- and are influenced by – the functioning of our major organs, the integrity of our immune defences and the working of the many circulating biological substances that help govern the body's physical states. When emotions are repressed, studies have repeatedly shown that this inhibition disarms the body's defences against illness. Even students studying for an exam are found to be at a greater risk of getting sick because stress suppresses their immune system.

In one chapter, Maté theorizes how repressed emotional states have been linked to multiple sclerosis, the most common of the so-called demyelinating diseases that damage the spinal cord, brain stem and optic nerve.

Researchers in Colorado looked at 100 people with the type of multiple sclerosis called relapsing-remitting, in which flare-ups alternate with symptom-free periods. Patients who experienced extreme stresses, such as major relationship difficulties or financial insecurity, were almost four times as likely to suffer exacerbations.

A 1969 study found that 85 per cent of MS patients first experienced symptoms of their illness in the wake of a highly stressful event. Another study found that severely threatening events were 10 times more common among MS patients, and marital conflict five times more frequent than in a healthy control group.

Maté interviewed eight women with MS for his book. Only one was in her first long-term relationship. The others had divorced or separated. Four of the women had been abused physically or psychologically by their partners sometime before the onset of illness.

While Maté doesn't believe that stress alone causes MS, he thinks stress is a required ingredient. The patients had been exposed to acute and chronic stress in their childhood, and their ability to engage in the necessary flight-or-fight behaviour to protect themselves was impaired, he writes.

It's not as simple as saying that the stress of losing a job or a loved ne led to the illness, he writes. Instead, these particular patients learned through their lives to respond to their stresses in a way that was very physically harmful. He says they had an "environmentally conditioned helplessness" that meant they could neither stand up to abuse or misery, or run away from it. Instead, they just took it all in.

Susan Sontag once angrily wrote that "the cancer personality is regarded .... with condescension, as one of life's losers."

Maté says that's not what his exploration of the "cancer personality" is intended to show at all. He describes one study that looked at melanoma patients, for which the Type C personality was first described.

The 1984 study measured the physiological responses to stressful stimuli among three groups: melanoma patients, people with heart disease, and a control group with no illness. Each person was connected to a dermograph to record the body's electrical reactions as the subject looked at slides displaying statements such as "you're ugly" or "you have only yourself to blame."

As their physiological responses were recorded, the subjects also had to say how calm or disturbed they were after reading each statement.

The physiological responses of the three groups were identical, but the melanoma group proved most likely to deny any awareness of being anxious or upset by the messages. The authors described them as having "repressive" tendencies.

Type A individuals are seen as "angry, tense, fast, aggressive, in control" and more prone to heart disease. Type B represents the balanced, moderate human beings who can feel and express emotion without being driven and without losing themselves in uncontrolled emotional outbreaks. Type C personalities are "extremely co-operative, patient, passive, lacking assertiveness and accepting."

Maté cites a study done on 10 per cent of the inhabitants of Cvrenka, in the former Yugoslavia. One thousand men and 400 women were interviewed for risk factors, as well as life events, and coping skills. Ten years later, more than 600 of the study participants had died of cancer, heart disease, stroke or other causes. The single greatest risk factor for death -- and especially for cancer death -- was called rationality and anti-emotionality. Cancer incidence was 40 times higher in those who answered positively to 10 or 11 questions that showed they repressed anger, than in subjects who answered positively to about three questions on repressiveness.

The researchers found that smokers had no incidence of lung cancer unless they also had a score of 10 or 11 on rationality and anti-emotionality. In short, smoking was not enough to cause lung cancer, certain psychological factors were also required.

Does the same hold true for breast cancer? This is a case of duelling studies. Perhaps no other cancer has been studied as deeply looking for links to emotion.

A British study released last summer concluded that violence, bereavement, debt and other stressful experiences did not increase the chances of a recurrence of breast cancer in women being treated for the disease. For five years, 202 women receiving treatment were followed. Seventy-six per cent of the women did not suffer a relapse during that period of time. In the remaining 24 per cent who did suffer a relapse, stress was not found to be a factor. Instead, risk factors for recurrence related to the type of tumour and whether the cancer had spread to the lymph nodes.

At the time, Dr. Donna Stewart, a professor at the University of Toronto, commented that the study's findings "made sense."

"People think stress causes everything. The evidence for stress is pretty low. And the evidence for hormones and genetics is pretty high."

Dr. Stewart was lead author of a 2001 study of nearly 400 women with a history of breast cancer who were asked what they thought had caused their malignancy. Forty-two per cent cited stress -- much higher than factors such as diet, environment, genetics or lifestyle.

But Maté sides with the impressions of Stewart's study patients, instead of Stewart. Only a small minority of women with breast cancer -- seven per cent -- acquire the disease because of genetics. And while he agrees hormones are involved, and are active promoters or inhibitors of malignancy, it is not true that their actions have nothing to do with stress.

"Hormone production is intimately affected by psychological stress," he writes.

Maté says an Australian study of breast cancer patients is more significant.

Researchers looked at 512 women who required breast biopsies and were interviewed before their diagnosis was known. It found that women experiencing a highly threatening life stressor and who were without intimate emotional support had a ninefold risk of developing cancer of the breast. Independently, neither factor by itself increased the risk.

Maté writes most passionately about autoimmune diseases. He has witnessed the death of two favourite patients to scleroderma, a sometimes fatal illness with symptoms ranging from skin thickening to the deterioration of the internal organs. The cause of most autoimmune diseases is unknown; however it has long been speculated that there is a direct link to stress.

In 1892, William Osler, a Canadian and considered one of the greatest physicians of all time, suspected rheumatoid arthritis to be a stress-related disorder. But Maté complains, rheumatology "all but ignores that wisdom despite the supporting scientific evidence accumulated in the 110 years since Osler first published his text."

Maté says that studies have shown that people with rheumatoid diseases are "stoic to an extreme degree," and have a "deeply ingrained reticence about seeking help." This non-complaining stoicism is a coping style acquired early in life.

Those with rheumatoid illnesses also exhibit perfectionism, a fear of one's own angry impulses, excessive self-criticism, morality and religiousness. They are often from two-parent households, but the parents are in conflict, either with each other or the child, who instead of being angry at the parent, directs the anger toward herself.

After reading the chapter, I did not think it applied to me. If anything, I have a Type A personality. I'm a confrontation, "say what I think" person.

I read the auto-immune disease profile to friends, who agreed it was nothing like me -- of course, they might have been afraid to say anything but that. And also, I know lots of people who fit the profile who aren't sick. Maybe Dr. Donna Stewart is right. We blame stress because it's the only thing lay people understand. How can I blame complex internal processes that I know nothing about?

As a patient, there is so much conflicting information. I once read that left-handers have more autoimmune diseases. I am left-handed. Perhaps it's the "stress" of living in a right-handed world that made me sick. Another study found that 99 per cent of those with lupus have testified positive for Epstein Barr and this might be proof that it's a trigger. I've had mono, too.

Maté asked for 30 minutes of my time and attempted to go to the heart of why I'm so hard on myself. He helped me see patterns I didn't realize existed. Meanwhile, I have learned to play only one string of my violin and try to accept if I do it badly sometimes. Surprisingly, I'm somewhat healthier. Maybe stress triggered a disposition I had to illness. Maybe it didn't.

Still, how does this jive with the medical model? A news story last week told of a vaccine developed in Australia that will apparently turn off autoimmune diseases. Obviously, it's not a vaccine against chronic stress, so following Maté's thinking, how could it work?

If we accept that chronic and often unrecognized stress contributes greatly to illness, what do we do with this information?

An entire industry has grown up around counselling patients, particularly those with cancer, to think "positively." Maté rejects this plan. He says that by encouraging patients to be optimistic or look on the bright side, we would be saying they are "not strong enough to handle reality."

"The onset of symptoms or the diagnosis of a disease should prompt a two-pronged inquiry: what is this illness saying about the past and present, and what will help in the future? Many approaches focus only on the second half of that healing dyad, without considering fully what led to the manifestation of illness in the first place. Such 'positive' methods fill the bookshelves and the airwaves.

“In order to heal, it is essential to gather the strength to think negatively. Negative thinking is not a doleful, pessimistic view that masquerades as 'realism.' Rather, it is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to?'

"Without these questions, the stresses responsible for our lack of balance will remain hidden."
Maté spends considerable time exploring the "dance of the generations," where our experience is shaped by our parents' behaviour, which is shaped by their parents' behaviour. He doesn't want to "blame" people's parents, but understand them.

“All of us dread being blamed, but we all would wish to be more responsible -- to have the ability to respond with awareness to our circumstances, rather than just reacting. We want to be the authoritative person in our own lives: in charge, able to make the authentic decisions that affect us. There is no true responsibility without awareness."

Maté then explores how patients can confront their ingrained patterns of behaviour and try to heal, if not their physical selves, their psychological selves.

Many people will accuse Maté of hurting sick people more than helping them. I can't help but think of all the chronically ill patients who, upon diagnosis, run out and buy every vitamin and supplement that has a tenuous link to good health, in the hopes it will make them better. Few stop to examine their emotional lives. Why should that be something to be afraid of?

Maté quotes Dr. Robert Maunder, a psychiatrist at the University of Toronto school of medicine, who says: "Trying to identify and to answer the question of stress is more likely to lead to health than ignoring the question."

Shelley Page writes for the Weekly.

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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