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Within the flowing garment of symptoms called neurasthenia there resided an anxious and depressed human being. But cultural pressures and family expectations surrounding this human being only deepened and prolonged the symptoms.G. F. Drinka (1984, 235-36)Neurasthenia has two sources: the constitutional [biological] basis of the patient's personality and social forces.
A Chinese psychiatrist (personal communication, October 1986)
We now turn to [neurasthenia,] a type of illness behavior out of vogue in today's North America, though it is common [in China]. In 1900 it was, by contrast, the medical cynosure of the age.
By neurasthenia was understood both weakness of the nerves and nervous exhaustion. A portmanteau term, neurasthenia packed together in the same category a syndrome of chronic fatigue, weakness, and a myriad of associated bodily and emotional complaints with a presumed neurological cause; as was stated then and now, it is a "real physical disease." The term was coined by the New York neurologist George Beard shortly after the Civil War, but the phenomenon had been noted in the West for a very long time under other rubrics. Fifty years after Beard gave it a new name, neurasthenia was a most fashionable diagnosis throughout the Western world. Beard originally called it "the American disease"; he avowed that it was greatly increased in prevalence owing to the "pressures" of modern civilization, especially in late nineteenth-century America. Drinka captures Beard's description of the paradigmatic neurasthenic male of the Victorian age by drawing on evolutionary (social Darwinist) and electrical metaphors, which were leading cultural symbols that shaped the period's medical models of illness:
A person with a nervous tendency is driven to think, to work, to strive for success. He presses himself and his life force to the limit, straining his circuits. Like an overloaded battery, or like Prometheus exhausted from reaching too high for the fire of the gods, the sufferer's electrical system crashes down, spewing sparks and symptoms and giving rise to neurasthenia. (1984, 191)
Weir Mitchell was the most successful physician of elite women during this period of North America's immense transformation by the forces of industrial modernization. He emphasized, with characteristic paternalism, Victorian women's cultural plight, which led them into neurasthenic careers: unhappy love affairs, loss of social position and wealth, "the daily fret and worrisomeness of lives which, passing out of maidenhood, lack those distinct purposes and aims which, in the lives of men, are like the steadying influences of a flying wheel in the machine" (quoted in Drinka 1984, 201).
Sicherman, a historian of late nineteenth-century America, notes that neurasthenia came to express dominant tensions of this period: "the overloaded electric circuit and the overdrawn bank account." There was believed to be only a limited supply of nervous energy, and like money and commodities in the capitalist marketplace, social pressures were placing "inordinate demands on that supply" (1977, 34, 35). Among the many patients given the diagnosis neurasthenia were William James, Henry James, Sigmund Freud, and Charles Darwin; no doubt Beard himself would have received the diagnosis had it been around and fashionable when he was an adolescent.
Howard Feinstein, in his biography of William James, summarizes the cultural antecedants and social importance of neurasthenia:
In mid -nineteenth-century New England it [neurasthenic invalidism] coalesced from a romantic and puritanical matrix into a durable social role. Salvation through work, condemnation of illness, suspicion of pleasure, and a belief that suffering leads to grace flowed from the puritan source. Insistence on self-expression, a high valuation of leisure, and the admiration of delicacy and acute sensibility issued from the romantic. In such vigorous crosscurrents, illness had considerable utility. It provided social definition, sanctioned pleasure, prescribed leisure for health, protected from premature responsibility, forced others to care, and expressed inadmissible feelings while protecting vital personal ties. (1984, 213)
In this age of very rapid development of society, neurasthenia and other medical labels began to replace religious categories for what today would be both popularly and professionally called "stress." Society was becoming more secular; the helping professions were gaining ascendancy in defining personal problems (Lasch 1979). Rieff (1966) called this development the "triumph of the therapeutic." More psychological complaints and interpretations of distress would begin later on, to replace the bodily complaints of neurasthenia in American and European society.
Drinka (1984, 230) notes that neurasthenic patients were the problem patients of their epoch: their symptoms were persistent; they were difficult to cure; they and their physicians tacitly recognized that the illness had cultural cachet, as well as a social utility in authorizing withdrawal from or negotiations in difficult relationships. As examples of social sources of personal and group distress among the middle and upper classes in the Gilded Age, Drinka names the strict double standard of "respectable" manhood and womanhood, the high value placed on choosing a safe career and managing wisely, and the responsibility to preserve the family fortune and good name.
Neurasthenia is no longer a fashionable diagnosis. Indeed, the one-time "American disease" is officially now not a disease in North America, inasmuch as the American Psychiatric Association's Diagnostic and Statistical Manual, third edition (DSM-III), the official diagnostic system of American psychiatry, has banished it from the orthodox nosology to be replaced by depressive and anxiety disorders, the contemporary terminology for hysteria (somatization disorder), and various psychophysiological and psychosomatic designations. The term neurasthenia, though still to be found in the World Health Organization's International Classification of Disease, ninth revision (ICD-9), is also out of popularity in Western Europe. The persistence of culturally salient complaints such as "fatigue" in France and "nerves" and "exhaustion due to stress" in Britain and North America, however, indicates that the phenomenon itself has not disappeared and may rather have acquired new names.
In certain areas of the world-for example, in Eastern Europe, Japan, India, and China-neurasthenia has continued to be used in its original sense as an important diagnostic label. The situation in China, where I have conducted field research, is particularly noteworthy. For there, neurasthenia, introduced from the West early in this century as a medical diagnosis, is the most common of all psychiatric diagnoses and one of the ten most frequent diagnoses in general medical clinics. On the other hand, depression and anxiety disorders are not extensively diagnosed there. In 1980 and 1983, my wife, who is a China scholar, and I conducted research at the Hunan Medical College-the old Yale-in-China Medical School and one of China's leading centers of psychiatry-to determine the relationship between neurasthenia and depression. We discovered that Chinese neurasthenic patients complain of many of the classical problems that Beard and Mitchell associated with neurasthenia: lack of energy, fatigue, weakness, dizziness, headaches, anxiety, and a wide assortment of other recurring but vague physical complaints. We also learned that most of these patients could be rediagnosed, using the American DSM-Ill criteria, as cases of depression or anxiety disorders. Yet their chronic neurasthenic complaints persisted even when they received effective doses of antidepressant and anti-anxiety medications. Only those patients improved who resolved a major family or work problem. Political, economic, work, family, and personal problems also played a role in illness onset and exacerbation. Our finding was that neurasthenia as a chronic illness is extremely sensitive to influences from the local life world of the patient and from the wider social system. This appears to have been the case in nineteenth-century North America as well.
Although neurasthenia is rarely diagnosed today in North American primary care or psychiatric practice, the syndrome of complaints is still to be found, and would seem to be common in the guise of "stress syndromes." The diagnostic labels are different, and so are the ways patients with these complaints are treated. I will describe two cases of neurasthenia, one from Changsha (a provincial capital in south-central China), the other from New York City. Again my focus is the meaning of symptoms and behavior to patient, family, and practitioners. Each case also brings a mirror to the culture and local social systems of its distinctive society. My interpretations of the cases will seek to understand two very different social worlds and their influence on the onset, course, and outcome of neurasthenia, and recursively the influence of neurasthenia on those life settings. Whether or not the official medical lexicon in a society treats neurasthenia as an authentic disease, the syndrome of chronic exhaustion is a ubiquitous illness behavior that can be described and interpreted for particular individuals engaged in particular situations and relationships within particular cultural contexts. Indeed, long before neurasthenia (shenjing shuairuo), the medical term, was introduced into the Chinese language, neurasthenia as a chronic behavioral problem was depicted in traditional Chinese medical texts. And long after it lost official status in North America, it is treated by clinicians.
First I will briefly narrate a case of neurasthenia from our research project in the department of psychiatry, Hunan Medical College, then I will expand the case description to interpret an important aspect of current Chinese society; finally, I will do the same with a North American case. A comparison of the two will offer additional insight into the meanings of illness.
A Chinese Case of Neurasthenia
Yen Guangzhen is a forty-year-old teacher in a rural Hunan town. She is intelligent, articulate, and deeply depressed. She sits immobile on the wooden stool opposite us, looking fixedly at the floor. Her black hair, tied tightly back in a bun, is streaked with white; her handsome, high-cheeked face has deep creases radiating outward from each eye. She slowly recounts for us the story of her chronic neurasthenia. Headaches and exhaustion are her chief complaints. Sitting before us, Comrade Yen radiates weariness and fatigue. She looks much older than she is, and at times it seems as if she has difficulty supporting her body. Her voice is weak.
There are several sources. Before the Cultural Revolution I was outgoing, active, had high self-regard. As a teenager I had been secretary of the local Communist Youth League. I dreamed of a career with the party and advanced education. My family and friends all expected great achievements. I had ambition and high goals. Then during the Cultural Revolution I was severely criticized. I had to leave my position in the Youth League. I went to the distant countryside to a very poor place.** I couldn't adjust to the conditions. The work was too hard; too little to eat. Bad smells were everywhere, and nothing was clean. Terrible living conditions!**During the Cultural Revolution millions of Chinese adolescents left their urban middle schools and were rusticated in rural communes, often remote and poor ones, where they were expected to engage in agricultural labor and learn from the peasants. Adjustment to conditions in the countryside was difficult for urban adolescents who lacked experience of the drudgingly difficult routine of rural life. Alternatively, adjustment of rural peasants to urban students was also difficult, especially when these students were seen as a drain on the limited and already oversubscribed resources of the commune. The stage was set for a culturewide crisis that has captured the imagination of creative writers in China (cf. Chen 1978; Link 1983; Barme and Lee 1979) and occupied center stage in the biographies of Chinese expatriates (Frolic 1981; Liang and Shapiro 1983). An excellent account of the lives of victims of the Cultural Revolution is to be found in Thurston (1987).**
All of this was made worse by the realization that her career aspirations were no longer tenable, that even return to an urban environment was unlikely. The daughter of intellectuals, with several generations of professionals in the family, Yen Guangzhen felt deeply the lost opportunity for a university education and career in the Communist party, sources of social mobility in China. Cut off from family and friends, books and newspapers, and initially not well accepted by the peasants, she grew aloof and solitary. As the Cultural Revolution accelerated, she occasionally bore the brunt of self-criticism sessions. On one occasion she was denied an injection by a nurse at a rural hospital who accused her of being a "stinking intellectual." She began to experience a change in personality. Comrade Yen felt constantly demoralized, and in place of her former optimism she felt hopelessness generalized to all aspects of her life. She expected only the worst to happen. She became introverted, sensitive to what she perceived as the criticizing and rejecting eyes of peasants and cadres. She began first to deprecate her goals, then herself. Hesitant where she once had been assertive, lacking confidence where she once had radiated it, Comrade Yen regarded herself as inadequate and coped by limiting her life even more. She stayed to herself. Eventually she obtained a post as a primary school teacher in a rural town. When her native abilities became apparent to her fellow teachers, they wanted to elect her principal. But Comrade Yen declined because she feared the responsibility. She did not want to expose herself again in a situation where she might well fail and suffer further losses.
She married a native of the region who is now a peasant but was previously a cadre in a mine. They live apart, and it is clear that she prefers it this way: he resides in a distant village and she lives in the small market town. They have three children, two adolescent sons who live with their father and one daughter who lives with her mother. Comrade Yen is angry that her husband has not been rehabilitated and given back his post as a cadre; her husband has given up, declaring that he will never regain his former status. This is a chronic source of frustration, another difficulty about which she feels nothing can be done.
Her third source of anger is her daughter.
I really did not want to have her. I wanted to be alone. We already had enough children. When I was very pregnant I hit myself several times quite hard against the wall, hoping I might abort. But my husband wanted a child and I could not decide on an abortion at the hospital. Thus I blamed myself when I gave birth to a baby girl with a withered arm. I felt I caused it.*
* From a biomedical perspective, it is hardly likely that the congenital abnormality resulted from Comrade Yen's actions during the pregnancy. But her guilt over her desire to terminate the pregnancy is fed as well by traditional Chinese ethnomedical beliefs that the thoughts, moods, and behaviors of the mother during pregnancy can symbolically impress themselves on the growing fetus.
The daughter grew up to be beautiful and very bright, an outstanding student. But her mother grieved for her because of her deformity. "In China normal people don't marry cripples. Even though she could do everything-cook, clean, play sports--I knew she would have trouble marrying." At this point in our interview, the patient silently cried, her gaze fixed on the cement floor beneath the table separating us.
Her husband, who had accompanied her, looked much older than Comrade Yen and was wide-eyed in a provincial capital he had visited only a few times before. His weather-roughened features contrasted with his wife's more refined ones. He joined her in weeping openly when she continued on about their daughter:
There is no hope for her. Even though she is one of the best students in the senior middle school, she cannot take the examination to go to the university. Her school principal and the secretary of the local branch of the party decided that only completely healthy, normal children can take the examination. We appealed to the county authorities, but they upheld the decision. There is nothing that can be done. Our daughter will live at home and do what work she can.**In the last several years the policy of discrimination against handicapped students has been changed. Now it is in principle acceptable for those with a handicap to go on to the university. But the association of stigma with disability is still widespread.
There followed several minutes when the patient could not go on, as she sobbed and wept. Finally, she told us how she and her husband had arranged for their daughter to meet another "cripple" in a nearby town. But her daughter decided that she would not marry someone else who was deformed; rather, she would remain single.
Comrade Yen shared her full hopelessness with us. Often she thinks it would be preferable to be dead. Her headaches and chronic fatigue keep her to herself. She cannot face any more "stress"; it is too upsetting. "My health is too uncertain. I cannot do too much. I think only of my headaches, not of the future or the past." Comrade Yen severely restricts her world. She withdraws from all but essential responsibilities. She cannot plan any outing "because of bad influences on my health-the weather, the noise, the crowds." She feels exhausted after even limited effort. She describes this state as a general sense of lack of energy, weakness, dizziness, and apathy.
Because of her pessimistic feelings of failure and hopelessness, she circumscribes her life to school and dormitory room. Only on occasional weekends does she visit her husband. Her daughter stays with her. They appear to be like two recluses, grieving their different losses. Yen Guangzhen's world is now that of pain and exhaustion: experiencing her hurt, waiting for it, fearing it, talking about it, blaming her problems on it, feeling exhausted by it, and obtaining relief through sleep and rest. It is the pain and related weariness and other complaints that legitimize her withdrawal at work and in family life. These same complaints sanction her isolation and demoralization. Her chronic pain and exhaustion are unavailing expressions of depression owing to her multiple losses. Before we departed she sent us a letter:
I feel always sad about being ill for such a long time. I feel headaches, dizziness, don't like to talk, take no pleasure in things. My head and eyes feel swollen. My hair is falling out. My thinking has slowed down. Symptoms are worse when I am with others, better when I am alone. Whenever I do anything I have no confidence. I think because of the disease I have lost my youth and much time and everything. I grieve for my lost health. I must work a lot every day just like the others, but I have no hope in what lies ahead. I think there is nothing you can do.
Three years later I received another letter from Yen Guangzhen, in reply to a request to return to the clinic for a follow-up interview. She declined with great politeness to return and mentioned that her symptoms were unchanged. She simply did not have the energy to travel and her headaches were made so much worse by the long bus ride and the questioning that she could not undergo another interview. She had had to take a year's leave from teaching and was requesting a disability status that would reduce her teaching or give her early retirement. She had received permission to return to the city where she was raised, but her parents were aged and infirm and she did not have the strength to look after them. Even writing the letter tired her and caused her head to throb. She was being treated by a doctor of traditional Chinese medicine for an inadequacy of qi (vital energy).
Neurasthenia in Chinese Culture
Neurasthenia plays a role in contemporary Chinese society akin to its role in turn-of-the-century North America. It provides the legitimation of a putative physical disease for bodily expressions of personal and social distress that would otherwise go unauthorized, or worse, be labeled emotional problems and mental illness. Mental illness in Chinese culture carries strong stigma, which, unlike the stigma of mental illness in the West, affects not only the person who is ill but the entire family. The family with a mentally ill member is regarded as carrying a hereditary taint of moral failure and constitutional vulnerability. It becomes difficult to marry off children and to maintain the family's status in the community. Hence individuals and families in China use euphemisms or disguising metaphors to describe distress of a psychosocial kind so that they can avoid carrying labels of mental illness or emotional problems. Whereas the language of stress has displaced the idiom of neurasthenia to serve this purpose in contemporary North American society, in China neurasthenia has found a new and welcoming home. [ "Stress" is just beginning to gain popularity in China, primarily among professionals.]
Another reason for the popularity of neurasthenia in China is that it avoids the use of terms such as depression, which convey a sense of alienation of a sociopolitical as well as psychological kind. For instance, during the chaos of the Cultural Revolution, Mao Zedong said that such mental illnesses were not so much diseases as they were wrong political thinking. The label depression, then, until very recently was a tricky one in China, since it indirectly conveys the idea of political dissatisfaction, a feeling unacceptable to many in China's morally fervent political context, where each individual is expected to participate energetically in mass political campaigns and local political groups (see Kleinman 1986).
Finally, neurasthenia as a concept has been fairly easy to assimilate to traditional Chinese medicine, which has since ancient times had an interest in problems such as weakness and fatigue. These have been attributed to problems in the flow or constitution of qi (vital energy), or in the balance of yin and yang elements in the body. After almost a century of assimilating neurasthenia to this conceptual system, traditional Chinese practitioners use it as if it were not a foreign import but a native product of the Chinese medical system.
Yen Guangzhen's experience illumines the contribution of potent social forces (political labels, mass campaigns, uprooting and migration, poverty, and so forth) and psychological factors (depression, anxiety, personality problems) to the cause and exacerbation of neurasthenia. That not all Chinese under the same pressure have developed neurasthenia indicates that genetic predisposition, family situation, and personal development place certain individuals at greater risk. The local social environment influences the impact of social forces on vulnerable persons. Some environments can shield, deflect, or otherwise minimize the effects of political oppression and economic deprivation. Others amplify these effects on particular individuals or categories of individuals (for example, the politically disfavored).
Neurasthenia has cachet in modern China. It is a diagnosis that can authorize the sick person to obtain disability benefits; it can justify early retirement; it can enable a person to change work or to move from the country to the city-in a totalitarian system where it is not easy to make such changes. Now that neurasthenia no longer has such cachet in North America, official diagnoses of chronic pain, depressive disorder, post-traumatic stress syndrome, or particular medical diseases must be used to obtain these social ends. The individual must call on illnesses that have official status as listings in the disability, medical, legal, and other institutional bureaucracies in North America.
For Comrade Yen's doctors, much of what we have reviewed is understood implicitly, though it usually is not directly discussed. These clinicians prescribe particular therapeutic regimens for treating neurasthenia symptomatically, just as they have their indigenous criteria for making the diagnosis. Intriguingly, neurasthenia patients in China occupy the same position as chronic pain patients in America: they are held to be problem patients who don't get well and who frustrate their care givers. Neither acupuncture and traditional herbs nor modern biomedical drugs are found very effective against neurasthenia. Perhaps we are viewing a dimension of chronic illness generally to which all medical systems respond with difficulty. Research with an epidemiological colleague of mine in Taiwan disclosed that even folk healers-who in non-Western societies have been reported to be effective sources of care for illness behavior problems-have their hands full with neurasthenia patients (Kleinman and Gale 1982). The problem may be that healers of all stripes run into difficulties in the long-term care of patient: with illnesses that can't be cured and that exhibit powerful social uses and cultural significance.
Let us turn now to a North American patient with weakness, exhaustion, and psychobiological distress so that we may consider the question, Whither neurasthenia in the United States?
Neurasthenia in Midtown Manhattan, 1986
Eliza Choate Hartman is a slender, pale, large-eyed, sleepy-looking, long-haired twenty-six-year-old. She works as a temporary secretary in New York City for her livelihood during the day, and at night and on weekends she pursues her metier as an oboist and clarinetist. Hers is an engaging, sensitive personality with old-world charm and a whimsical comic sense, but neither vigorous nor assertive. There is something languid in the style of her movements that reminded me of "leisure" in its nineteenth-century European sense. There is also something vulnerable in her personality that periodically leaves her hesitant, a bit flustered, even at times guilty-looking. The first thing she confided to me was her feeling of embarrassment that her complaints of fatigue and exhaustion were considered a chronic illness, with all that the term conveys of disability, seriousness, and even a threat to life. Yet she quickly assured me that her symptoms are slowly "killing" her. The words she used to describe her condition were spoken one by one, with a pause between each as if to give her time to savor choices from a rather lengthier mental list: "tired ... .. weak," "constant, nagging dry throat," "getting out of breath," "always feeling on the verge of getting a flu or grippe," "never feeling good," "exhausted." The last was pronounced with an exaggeration of the middle syllable and a sigh of languor accompanied by a mime of dropping eyelids, lips, and head. Eliza traces the onset of her condition to a bout of mononucleosis two and a half years ago.
I wore myself right out and got mono. I was working full time as a waitress at a Manhattan restaurant. I walked about forty-five minutes to get there and forty-five minutes back. But first, before I went home, I went to practice the oboe and clarinet by myself and with a small ensemble in a loft about half an hour from my flat. I, we worked very hard. We were to appear that summer at a small music festival in upstate New York. Sometimes we played until midnight. After that my boyfriend and I walked back to the tiny flat we rented. That was even more exhausting. We were in the process of breaking up, and each night we fought for as long as we stayed awake. I never got enough sleep. Sometimes I slept in the loft. Walking back and forth, I got chilled and was exposed to rain and wind. I think that also had something to do with getting sick.The mono really scared me. I didn't know what was wrong. Each day I felt sicker. I was so weak I couldn't walk more than a few blocks without feeling exhausted.
My body ached. And I got this very dry sore throat. I felt a heaviness in my body, and the feeling I have now, that it is harder to move, to make an effort than before. But in spite of this I had iron willpower and determination. I tried to keep going. My mind would get there first and dragged me behind. But for a month I was out of it, totally out of commission, unable to work or be with my friends or make music. Since I'm a single woman on my own that was scary for me.
The trouble is, you see, I never fully recuperated. I didn't have the time. I had to get back to work or I would have lost the only job I could find. I had this image of negative energy building up in my body, and not being able to get rid of it. I went back to the same exhausting routine and I've been sick ever since. I really need time, lots of time off, to recuperate fully, to get back my strength and my health. If I keep up the present schedule, I don't know-it's real scary; I can't seem to get over it. If I were to win the lottery, now, then I'd be able to rest and get better. Keep my schedule from not overdoing things. Work on what's important: my music. That's all. What worries me is that I feel like I could come down with mono again, get really sick. I can't go through that again-it was terrible, isolating, difficult to start over. I couldn't keep up.
Eliza feels like she is "decaying," "eroded," "not having strength, being drained." Her throat gives her a constant sense of being "red and raw." These symptoms affect her almost every day, with a respite two or, at most, three days per month. The mornings are usually good, but "by 3 P.m. I feel dragged out and my throat hurts." If she doesn't sleep for at least eight hours at night, then the mornings are bad, too. "If I don't talk. If I rest. If I sleep well and spend hours by myself. If I don't overdo the practicing, it will get better." But Eliza does not feel able to gain such control over her life. As a result, she believes that her resistance is always low, leading to frequent "colds," which further weaken her.
Eliza strongly dislikes her work as a temporary secretary. She finds the work "dull, mechanical, draining.... But I can't afford to stop working. It's my only source of income." Because of her debilitated condition and her need to work full time, she has had to sacrifice her music. She has dropped out of the ensemble, with a great sense of loss, and has even reduced her practice time to a bare minimum. Even with these severe adjustments, she feels she cannot find enough time in her daily schedule to obtain the rest she requires to gain back her strength.
In her quest for her lost health, Eliza has consulted a range of physicians, most notably those who practice holistic health-in which she is a firm believer-as well as health food advisers; secular counselors of various persuasions; experts in massage, meditation, and yoga; a chiropractor-dietician; a self-help group for patients suffering chronic illness; and most recently, in rapid succession, a reflexologist, a voice therapist, and a Chinese herbalist. Eliza has followed various diets, usually vegetarian, raw, and free of sugar. She has taken various antibiotics, and her medicine cabinet is full of a large array of vitamins, tonics, healing herbs, and several exotics such as tiger balm from Hong Kong and ginseng from North Korea. In light of her yearly income of $17,500, Eliza's considerable expenditures on health represent her chief expense apart from rent and food.
I spoke on the telephone with the primary care physician who had provided her biomedical care for almost two years. He listed Eliza's problems as "malaise, fatigue, and recurrent pharyngitis." When asked on a mailed questionnaire to circle the part of a figure of the human body that was affected by her illness, he put a circle around all of it. He listed her symptoms as "very severe," but her physical disability as "mild," and he thought that psychological problems and emotional distress combined in a psychosomatic disorder. This midcareer clinician felt confident in Eliza's medical management but reported at the same time his disquiet that treating her was "extremely difficult." He told me, "In the old days I think Eliza would have been diagnosed either as a neurasthenic or some kind of postinfection debility syndrome."
Eliza's major source of help (and difficulty) is herself.
I think before I was constantly looking for help or reassurance from people and it wasn't always helpful. I've been fighting my symptoms for two years-worrying constantly, trying mightily to be healthy again. My overachiever pattern that got me sick was still in gear. I felt ashamed of being sick, of failing behind, and needed to push myself. I need to let myself be sick, not push myself to be healthy, which isn't helping. You can't simply see how feelings affect your health and then jump to control their effect on you. You need to express those feelings physically, you need to create space and time to cry, rage, laugh, really get it out. Change then becomes much less of a struggle.When I get into something like a performance, I get all wound up over things to do the next day. I really have trouble sleeping. I feel exhausted in my bones, and my throat gets sorer. Most of the time I'm worried. I can't rest or relax or get enough sleep. Will I be able to do what it takes to make me better?
My physician and his specialist colleagues don't take my past mono, lack of recovery, and fatigue seriously enough. I recently went to an infectious disease expert and felt better. Maybe they will find a virus, like EB [Epstein-Baff) virus. If this workup is negative at the hospital, well, I will have more trust in my doctor. He didn't refer me; I went on my own.
Eliza describes her symptoms as "whole-body tiredness." She regards herself as vulnerable to fatigue, lassitude, and extreme weakness if she overextends herself or fails to get adequate rest. This sense of vulnerability is constant and strongly influences her daily decisions and life style. When she begins to practice the oboe or clarinet, she often feels a wave of fatigue pass over her body. If the fatigue persists, she feels the need to put down her instrument and sleep. Sometimes, however, it is the parched throat that interferes with her playing. Deep sleep relieves the throat (as it does the fatigue), and so does warmth, resting in a warm place ("like a long leisurely warm bath"), and "staying under covers." Not enough sleep and rest, being cold, eating sugar or wheat, and playing her wind instruments for too long make her symptoms worse.
I was not able to stop and rest and get over it when I was sick. I took care of my boyfriend, not myself. I worked and worked, hadn't learned how to take care of myself. I have a lot of regret about my illness: it was totally beyond me. I feel ashamed that I could be sick that long. My real fear is that I will get really sick again. Have to start from scratch again and then will interrupt, inhibit the progress I have made that has gone so slowly and taken so long. Maybe it will be another five years before I regain my health.
Her history as elicited in psychiatric examination is consistent with a diagnosis of dysthymic disorder--chronic low-grade depression and demoralization related to her disease. The condition has become so much a part of her illness and of her life generally that it seems part of her very personality. She feels lonely, sad, angry, and desperate about her ill health and about her unsatisfactory work, abandoned music, and lack of a boyfriend. Sometimes she feels guilty and blames herself for her situation; at other times she blames her problems for causing her feelings of isolation, joylessness, and occasionally hopelessness.
Eliza's usual work as a temporary secretary is low-level typing. She calls the work "repetitive, dull, unrewarding." It is a constant source of frustration to her that there is so little time for her "true work," her music, while her job takes up so many of her hours. Her work is not up to her occupational standards, nor does it pay well; but it is all she has been able to find to enable her to maintain her independence. Nevertheless, she feels dehumanized and alienated at work. She feels that her lack of energy prevents her from finding a better job, but her fear that she could lose what she has has caused her to hesitate even to negotiate with the secretarial agency for higher pay or to work fewer hours; yet an improved work situation would be better for the life style she wishes to create. She attributes her unacceptable position to a lack of self-efficacy, a failure to be tough enough to succeed in a world that demands aggressiveness.
Eliza Hartman's narrative swings back and forth between two opposing plot lines about how her family life and childhood development contribute to her present troubles. In one version, her parents are accused of overprotecting her so that she was not prepared (and still is not) to meet the practical difficulties of "real life." In the other version, her parents (and others) are accused of not having done enough to give her the time, money, or practical help to recuperate fully. Her narrative is not so much a description of her experiences as a justification for what she perceives as a series of failures that have knocked her out of her expected life course, derailed her aspirations, and "left me in limbo."
The only child of a second marriage, between a German Catholic emigre engineer and a Quaker housewife, Eliza sums up her early experience in the Hartman family: "I was spoiled badly. The neighboring kids resented this and they treated me very harshly. My first experience of contradictions between what my parents told me about life and how it really is."
She spent most of her time with her parents,
in a world of my own: not many friends, alone. I was a good student but terrified I wouldn't do well.I got the message from my parents; you always will be taken care of. I was raised in a middle-class life style. Had everything I wanted, but was made to feel that's how it always would be. No one ever told me living-working would be so bloody hard; that you would have to develop your toughness and strength to deal with problems. That one day you would be on your own, alone, with no one but yourself to rely on. When things really got bad I didn't get taken care of, anyway. I blame my folks for this feeling. My mother has never had to deal with what I do as a single woman and musician. She didn't prepare me for life. She never had to deal with a career, making money. She came from a privileged upper middle class background. And my father merely continued more of the same. My father should have known better. I feel resentment about the difficulty I had breaking away, becoming independent.
Growing up, I didn't have a life of my own. I did what others wanted me to do. I was wrapped in a cocoon and only now am coming out. I followed what others did. No one ever taught me to care for my body properly, to discipline myself. I was fat and sloppy.
Like a revisionist historian, Eliza reinterprets her biography almost wholly through the lenses of her current problems and her perception of the failures of her parents to prepare her to handle sickness, the daily drudgery of uninspiring work, and being alone. She feels her parents have never accepted her illness and her role as chronically ill. She believes they want her to participate with them in a collusion of silence over her exhaustion and especially her psychological state. During most of her childhood and adolescence, Eliza had frequent low-grade sicknesses and missed a great deal of school. Now she recognizes that whenever she felt seriously stressed she would amplify complaints, particularly fatigue and gastrointestinal symptoms. Her parents, she avers, never accepted her image of herself as vulnerable and weak, but they did let her stay out of school.
I was raised by my father's mother, who did everything for me. I never had a sense of self -efficacy, even in music I always had my doubts. There's an underlying stress in my life that I don't like to admit-but I'm only comfortable when other people are taking care of things. It feels right, like when my friends are working on my apartment. I have this nice sense of things being accomplished and all's right with the world. But when they leave some project for me, I have this overwhelming dread that it's going to be hard, if not impossible. I'll probably never finish it and it might kill me-this makes it a little tough to get up and go to work every day. I just don't really believe I'll survive it.
Eliza often excuses such feelings of dependency and inefficacy in handling the real-world problems she faces because they are due to or intensified by her illness. Her illness has given her a sense of falling behind, missing out on the normal development of career and relationships; and it has supplied an explanation to justify her situation. "I feel there is no time for my metier. I am pissing away time each day, just recuperating: just to physically live."
Eliza Hartman is also quite capable of standing aside and looking ironically at her failures and losses.
Sometimes I think that society is so organized so that each of us must spend all our hours surviving, we are not supposed to have time to break our concentration on the rat race and see the world as it is. What we do is fill our vision and thoughts with all the concrete details, all the things to do. That's me, all right. The illness, my work, financial problems, practicing my music. There goes my day. No time to look around, see the carrot and the stick, analyze things. Each of us needs an anthropologist.
Beneath her many theories and her persistent complaints, Eliza Hartman holds firmly to the idea that she has a basic deficit in energy, a weakness at the core-a problem in her vitality, and exhaustion of resources, a general decline in functioning. I will return to this conviction, and to her lack of insight into the strategic uses and the powerful nonverbal communication of her symptoms, when I compare the Chinese and American cases of neurasthenia.
Interpretation
We have much more information about Eliza Hartman than we do about Comrade Yen. Yet we recognize both important similarities and equally important differences. There are similarities in their bodily symptoms of distress-the weakness-exhaustion-demoralization constellation-that fit the classical pattern of neurasthenic complaints described by George Beard in Manhattan one hundred years before Eliza Hartman (living in the same borough) and Comrade Yen (residing in a radically different society ten thousand miles away) developed their disorders. The similarities are not surprising, since the biology of stress and demoralization (including changes in the brain's limbic system, the neuroendocrine system, the autonornic nervous system, and cardiovascular and gastrointestinal physiology) underlie this syndrome. Comrade Yen's condition takes on meaning within a shared popular and professional conception of neurasthenia in Chinese culture, but the picture in North American society is more complex. Eliza Hartman probably has little idea what neurasthenia means, and her explanation of her illness draws on a bewildering variety of biomedical, alternative medical, and popular sources. For example, her views on lack of vitality fit in well at the holistic medical center she attended, where a program of "revitalization" was emphasized. The views of that program reciprocally intensified Eliza's interest in this aspect of her illness. But in addition she made use of concepts from the stress model of illness, the hot/cold folk theory of illness, psychoanalytic psychotherapy, and much else besides. Eliza Hartman had even been treated by a traditional Chinese physician now practicing in Manhattan's Chinatown. Such is the exchange of knowledge and commodities between societies in our era!
There is also an important structural similarity in the causal nexus of both cases. Eliza and Comrade Yen have both become involved in vicious social cycles creating and intensifying demoralization and its bodily forms. In each of their lives, work, family, and personal problems are instrumental antecedents and consequents. We have here evidence of a lasting element in the human condition that is similar in Hunan and New York. The uses to which both illness careers get put are also aspects of a shared humanity.
Another important similarity is that both patients regard their illness as caused by physical factors. For Eliza Hartman, new biomedical interest in chronic viral disease offers her an up-to-date medical explanation of her chronic fatigue syndrome that removes feelings of personal accountability while encouraging the hope that biomedical research will discover a technical intervention that will cure her. There is a controversy in American medical circles as to whether chronic viral disorders actually cause chronic fatigue and depression, or whether the weakness and the rest of the neurasthenia-like syndrome arise from the patient's psychological reaction to life's problems and the search for a more socially acceptable medical excuse. This controversy is not unlike the one that swirled around neurasthenia in North America earlier in this century; consider also the current debates over whether hypoglycernia and food allergies cause fatigue or whether muscular trigger points give rise to pain. In contemporary Chinese society neurasthenia is a medical legitimation for problems that otherwise would raise serious moral questions of personal responsibility; thus disease labels play the same role for Comrade Yen and Eliza Hartman.
But there are also great differences between the two cases, differences in the particular sociopolitical, economic, and cultural systems that make of China and the United States such radically different societies. There are also striking differences in these two patients' local environments, personalities, outlooks on the world, responses to illness, and outcomes. Comrade Yen is stoic and has a no-nonsense practicality; she lives under a moralistic peasant ethos with unrefined language, harsh conditions, and an expectation that most personal problems must be endured. Her situation contrasts markedly with Eliza Hartman's: Eliza is very expressive and has a psychological orientation; she perceives a lack of practical experience and discusses life's problems archly, through the lens of her overly sophisticated, urban, upper middle class rhetoric; she expects that most personal problems can be changed. Thus the case analyses are led in different directions: Comrade Yen's more toward her social situation, Eliza Hartman's more toward her inner self. And the same differences have led Comrade Yen's doctors to focus on neurasthenia as physical disability and most of Eliza's doctors to emphasize psychological factors.
Neither person has insight into the way her chronic illness expresses and helps resolve tensions in her life. And this may be a salient similarity worldwide. The chronically ill are caught up with the sheer exigency of their problems; what insight they possess into its structural sources and consequences they are not expected to voice. This is a social fiction of the illness role. The patient, in order to legitimately occupy. that role, is not expected to be consciously aware of what she desires from it, what practical uses it has.
For the treatment of "neurasthenia" in North America, psychotherapy is an appropriate intervention; in China there is hardly anything that we in the West would call psychotherapy. Social interventions would be helpful in both cases. But neither under capitalism nor under communism does appropriate social change to reduce specific social problems seem feasible. Indeed, massive social transformations have contributed to Comrade Yen's problems. Nonetheless, some of these problems may respond to change of work or highly focused interventions in workplace and family. Both cases require such interventions along with more standard psychological and medical treatments. Yet the structure of biomedical care in both cultures tends to preclude the necessary social interventions.
Comrade Yen and Eliza Hartman, like the other chronic patients whose stories I have recounted, are problem patients for their respective medical systems. There are several reasons for this cross-cultural similarity in the care of the chronically ill. Surely, frustration for patients, for families, and for practitioners can result from the sheer chronicity, poor outcome, complications, high costs, and the many other difficulties that beset effective care for this group of patients. Yet there is one source of problems in care that is close to the central theme of this book. Care of the chronically ill brings out the inherent potential for the patient's principal concern with the illness to clash with the practitioner's chief interest in the disease. And clash they often do. . . .
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