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Symptoms in Search of a Disease: Neurasthenia, Chronic

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Symptoms in Search of a Disease: Neurasthenia, Chronic SYMPTOMS IN SEARCH OF A DISEASE: NEURASTHENIA, CHRONIC FATIGUE SYNDROME, AND THE MEANING OF ILLNESS FROM MODERNITY TO POSTMODERNITY LISA HELD A THESIS SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS GRADUATE PROGRAM IN PSYCHOLOGY YORK UNIVERSITY, TORONTO, ONTARIO JANUARY 2008 Library and Bibliotheque et 1*1 Archives Canada Archives Canada Published Heritage Direction du Branch Patrimoine de I'edition 395 Wellington Street 395, rue Wellington Ottawa ON K1A0N4 Ottawa ON K1A0N4 Canada Canada Your file Votre reference ISBN: 978-0-494-38781-8 Our file Notre reference ISBN: 978-0-494-38781-8 NOTICE: AVIS: The author has granted a non­ L'auteur a accorde une licence non exclusive exclusive license allowing Library permettant a la Bibliotheque et Archives and Archives Canada to reproduce, Canada de reproduire, publier, archiver, publish, archive, preserve, conserve, sauvegarder, conserver, transmettre au public communicate to the public by par telecommunication ou par Plntemet, prefer, telecommunication or on the Internet, distribuer et vendre des theses partout dans loan, distribute and sell theses le monde, a des fins commerciales ou autres, worldwide, for commercial or non­ sur support microforme, papier, electronique commercial purposes, in microform, et/ou autres formats. paper, electronic and/or any other formats. The author retains copyright L'auteur conserve la propriete du droit d'auteur ownership and moral rights in et des droits moraux qui protege cette these. this thesis. Neither the thesis Ni la these ni des extraits substantiels de nor substantial extracts from it celle-ci ne doivent etre imprimes ou autrement may be printed or otherwise reproduits sans son autorisation. reproduced without the author's permission. In compliance with the Canadian Conformement a la loi canadienne Privacy Act some supporting sur la protection de la vie privee, forms may have been removed quelques formulaires secondaires from this thesis. ont ete enleves de cette these. While these forms may be included Bien que ces formulaires in the document page count, aient inclus dans la pagination, their removal does not represent il n'y aura aucun contenu manquant. any loss of content from the thesis. Canada Abstract Disease is an objectively verifiable disorder of bodily functions or systems, while illness is a subjective experience of symptoms. This distinction, rooted in Cartesian dualism, categorizes symptoms as either psychogenic or biogenic. Neurasthenia of the late 19th- and early 20th-centuries, and chronic fatigue syndrome (CFS) 100 years later, have been compared by historians due to their remarkably similar symptom presentation and common etiological controversies. Both have, at times in their histories, been interpreted as psychogenic illnesses and biogenic diseases, making them representative case studies of how the meaning of symptoms influences both the construction of disease and the illness experience. In this thesis I reconstruct the contemporaneous discourses regarding symptomatology, etiology, and treatment for neurasthenia and CFS. Despite remarkably similar symptoms, the meanings ascribed to these symptoms, and thus the illness experience itself, is contingent on sociohistorically-situated factors, rendering the claim that CFS is neurasthenia revisited problematic. iv TABLE OF CONTENTS Abstract iv 1. Introduction 1 Neurasthenia and Chronic Fatigue Syndrome: The Case for Comparison 4 Neurasthenia and CFS: An Overview of Symptoms 7 The Theoretical Underpinnings of Health and Illness Perceptions 11 Overview of the Current Project 19 2. Neurasthenia and CFS: An Historical Timeline 20 Neurasthenia - What it Was and What it Wasn't 20 The Varieties of Neurasthenia 25 Who Became Neurasthenic 28 The Beginning of the End 31 Somatization in a Post-Neurasthenia World 38 The Bridge Between Neurasthenia and CFS 42 A Mysterious Illness Emerges 46 What's in a Name? 50 Who are CFS Sufferers? 53 Conclusion 56 3. Neurasthenia and CFS: Etiology and Treatment 58 Etiology: The Biological, Psychological, and Social 58 v Biological Theories 59 Psychological Theories 66 Social Theories 71 Treatment Strategies: Biological, Psychological, and Social 76 Biological Treatments 77 Psychological Treatments 81 Social or Lifestyle Treatments 86 Conclusion 91 4. The Socio-cultural Shaping of Illness Representations 93 Negotiating Diagnosis 93 The Importance of Diagnosis: Legitimacy or Stigmatization 102 The CFS Counter-narrative 107 Conclusion 114 5. Conclusion 117 The Meaning of Symptoms 117 Postmodern Medicine: Hope for the Future? 120 References 125 vi Introduction Were it possible for us to take a glance at the constitution of a man, as man was originally made, we should in all probability find that, in relation to mere anatomical details, there was no essential difference between him and the man existing in the nineteenth century. We might even go farther than this, and, by the most able chemical investigation, analyse tissue after tissue without finding the slightest variation or change. We might bring the most powerful and most modern appliances to our aid, and yet as far as human research is concerned, we should be unable to reveal any ultimate difference, which could enable us to arrive at a conclusive estimate as to the reason, why we should suffer from diseases which never existed in the body of primitive man. (Dowse, 1880, p. 17) More than a century after physician Thomas Stretch Dowse wrote these words, we still grapple with the same question: Why should we be seeing diseases today for which there are no precursors, despite the physiological similarities between modern and primitive man? Perhaps similar symptom presentations are interpreted differently and disease categorization schemas are changing more than physiology. Unlike nineteenth- century physicians like Dowse who had nothing but subjective patient accounts of symptoms on which to base disease legitimization (Theriot, 2001), contemporary physicians require an objective, demonstrable link between symptoms and organic pathology before granting disease status. In fact, physical symptoms may not be indicative of disease at all, but rather of illness. This distinction between disease and illness (Feinstein, 1967) is reflected in medical textbooks in the following way: "disease is an objectively verified disorder of bodily functions or systems, characterized by a recognizable cause and by an identifiable group of signs and symptoms. Illness, by contrast, is used inside medicine to indicate the patient's subjective experience, which may or may not indicate the presence of disease" (Morris, 1998, p. 37). 1 Biomedical technology has forced this disease-illness distinction as we have become able to "see" into the body in ways that were unavailable to Victorian physicians. It is now possible to be diseased - one can have high blood pressure, cancer, osteoporosis - devoid of any subjective experience or report of illness (Theriot, 2001). We can also be ill without being diseased. Psychosomatic illness is defined, in fact, as the presence of symptoms in the absence of disease (Shorter, 1994), or symptoms that cannot be scientifically explained. While some disease categories like neurasthenia, insanity of adolescence, and hysteria have disappeared from the diagnostic nomenclature (Theriot, 2001), certain symptoms - like fatigue and pain - have transcended historical boundaries and have changed little quantitatively or qualitatively (Shorter, 1992). Time and place, however, have changed the meaning of these symptoms (Aronowitz, 1992). The meaning that accrues to symptoms is a sociocultural product expressed in the form of illness scripts which grant approval to some symptom forms in certain places and times while discouraging others (Horowitz, 2002). There is an inherent reflexivity between biology and culture that shapes the interpretation of physical sensations and occurs beyond the awareness of individuals. Historian of medicine Edward Shorter (1994) points to both social and medical models of behavior as shaping symptom presentation. For example, upper class nineteenth-century women, who were encouraged to be passive, could present with paralysis because it was not only an accurate reflection of women's social and gender role status, but because it also fit the prevailing medical model inspired by Charcot's (1825-1893) conceptualization of hysteria. Symptoms like paralysis and hysterical fits would, today, be socially unacceptable given current cultural 2 expectations of women to work outside the home, raise children, take care of aging parents, and more. Ware and Kleinman's (1992) "sociosomatic" approach describes the interaction between culture and biology as the way in which "events and processes in the social world influence symptoms; (and) symptoms themselves shape and structure the social world" (p. 548). This interaction, and the relative status of culture and biology in the interaction, is open to various interpretations. Had Dowse been alive a century later, he may have rephrased his question the way Shorter does: "When symptoms change, is it because life has become more stressful, because the biological basis of illness has altered, or because the culture enveloping us has started sending different messages?" (p. viii). Rosenberg (1989) argues that disease, while consisting of a biological event, requires consensus in order for it to be named as such. Shorter (1994), emphasizing the biological, hypothesizes that
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