INFLAMMATORY BOWEL DISEASE AS A CULTURAL ARTIFACT

347 Pages·2010·14.06 MB·English

INFLAMMATORY BOWEL DISEASE AS A CULTURAL ARTIFACT: AN ETHNOGRAPHY
OF THE POLITICS OF SUFFERING
by
JOHN SIMON FOULDS
B.A. (Hons), Simon Fraser University, 1969
M.A., Simon Fraser University, 1971
A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE
REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
in
THE FACULTY OF GRADUATE STUDIES
(Department of Anthropology and Sociology)
We accept this thesis as conforming to the required standard
THE UNIVERSITY OF BRITISH COLUMBIA
©J. Simon Foulds, 1984
In presenting this thesis in partial fulfilment of the
requirements for an advanced degree at the University
of British Columbia, I agree that the Library shall make
it freely available for reference and study. I further
agree that permission for extensive copying of this thesis
for scholarly purposes may be granted by the head of my
department or by his or her representatives. It is
understood that copying or publication of this thesis
for financial gain shall not be allowed without my written
permission.
7eU>>
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ABSTRACT
This thesis is an analytical ethnography of the experience of chronic
illness in the contemporary setting of a modern Western society. The
substantive data is presented in the form of more or less extended narrative
accounts from a number of unrelated individuals recounting and reflecting
upon their situation. This is data collected from volunteer informants, in
response to a publicised interest in contacting informants from within a
particular local area who had been diagnosed as suffering from inflammatory
bowel disease (IBD).
The initial focus was limited to trying to determine how individuals
reconciled themselves to the biomedical interpretation of their condition,
which was known to be described as a chronic and sometimes fatal syndrome, of
uncertain etiology, and for which there was no established cure. The
ethnographic material, however, reveals that for some of the informants the
full character of their conditions is not adequately subsumed by their
received medical knowledge. In fact, it suggests that an appreciation of
what is (or was) wrong with them lies much more in the domain of their
handling of the symbolism of selfhood and in their response to the constraint
of social authority. For, importantly contained in many of these accounts
is evidence that a route to self-healing can be found in the active
repudiation of medical knowledge and treatment, and in the development of a
more autonomous mode of self-understanding. This possibility stands as the
most dramatic implication of the ethnography, and one moreover that has
continued to elude many of the informants who go on struggling with their
pathology.
The thesis then endeavours to show how and why cultural knowledge is
deployed so differentially among a small collection of individuals having a
particular physiopathological distress, as they construct meaningful
interpretations of what is wrong with them. At this level, they construct
that meaning from information gleaned from experience as a patient at the
hands of medical and surgical practitioners; from other often long-standing
relationships in which they frequently tend to view themselves simply as
objects of wider social conventions and beliefs; and in some cases from an
insistent discord between those contructs and the knowlege that appears to
emanate from the self-destructive happenings within their own bodies. The
focus here is on the dominant ideas brought to bear in reflecting on the
meaning of illness and the nature of selfhood, especially those ideas that
concern the symbolism and rhetoric of biomedical versus psychosocial
interpretations of illness.
The systematic elucidation of the points of linkage between disease
progression, and its attendant surgical interventions, with concurrent events
in the daily lives of the informants, stresses, at another level, the
importance of acts of individuation and actions that promote self-knowledge.
Here the thesis is concerned primarily with the critically different ways in
which actions reflect the relation between a sense of identity and the
projections of their selfhood made by significant others in their lives, not
excluding medical practitioners themselves.
The intertwining of these two levels of experience, illustrated by
reference to the narratives, allows for the development of a theory that
iv
offers reasons why and how some individuals continue to be sick, or else
recover. It is argued that there is a history embodied in the illness
careers of these informants, representing a form of learning. This can be
summarily described as one of the generation, maintenance and ideally
eventual release from emotional restraint and from informal and formal social
controls. It is argued that the same pattern of authoritative control is at
work which generates the sickness and allows for the acceptance of impersonal
diagnosis. It is also suggested that it is the physiological consequences of
this pattern which produces the symptoms for which the remedy is sought.
Finally, an argument is made that provides an ethnomedical acounting for
the existence of the syndrome as a cultural 'product 1, a rationalization of a
particular way of treating symptoms. And for the individual sufferer, this
biomedical logic which categorizes and explains the syndrome, once accepted
and acted upon, reinforces already maladaptive behaviour in other settings
and inhibits the learning process, thus further reducing the possibility of
regaining health.
TABLE OF CONTENTS v
ABSTRACT ii
Chapter
I INTRODUCTION: Scope and Aims
Introduction and general argument 2
The production of a thesis: i n i t i al questions 7
Home-made critiques of home-made beliefs 10
Ex libris: the search for missing links 12
The production of a thesis continued: choosing
and validating a methodology 15
Paying the price of curiosity 17
The analytical argument and the presentation
of the data 18
Footnotes to Chapter I 27
II ACQUIRING A FORMAL EDUCATION 31
Introduction 32
The medical definition of IBD 33
The etiological problem: physical, psychological
pathogenesis? 35
The gastroenterological interpretation:
psychosomatic etiology refuted? 38
Reconciliation of perspectives: illness is
stressful 42
Crohn's disease: a separate issue? 44
A wider context: the promise of epidemiology 45
Footnotes to Chapter II 49
Chapter vi
III ESTABLISHING A METHODOLOGY AND FINDING
INFORMANTS 50
Introduction 51
Theory advises methodology 55
Terms of the interview contract 57
IBD informants in a local context: local
influences 58
IBD sufferers: i n i t i al observations 62
Footnotes to Chapter III 66
IV MAKING ANTHROPOLOGICAL SENSE OF A CRUCIAL
ACCOUNT 69
A fieldwork intention and the first interview 70
"Sarah": a crucial informant 74
Reflections on an account 83
A double-bind resolved in therapy? 84
Illness experience and formal knowledge of
IBD: possible connections 86
Discarding diagnosis: the personalizing process 87
The analytical value of the conversion
phenomenon 88
Conversion, social contexts, moral rules
and axioms of thought 89
Reflexivity, reification and IBD as a
cultural artifact 91
Footnotes to Chapter IV 95
Chapter v ii
V THE NATURAL HISTORY OF SUFFERING 1.
CONVERSION AND ITS RAMIFICATIONS 97
Introduction 98
The converted. Putting illness behind them 100
Emotionality, personality and social
organization: the basis for a theory 148
Footnotes to Chapter V 158
VI THE NATURAL HISTORY OF SUFFERING 2.
VACILLATION AND LIMINALITY 159
Footnotes to Chapter VI 212
VII THE NATURAL HISTORY OF SUFFERING 3.
SELF, SOCIAL SELF AND THE BODY 213
Footnotes to Chapter VII 287
VIII CONCLUSIONS 288
Illness as learning 291
Emotionality and Selfhood 296
Social contexts and Selfhood 297
Selfhood and the medical context 302
Unfinished business 1: epidemiology 307
Unfinished business 2:
Psychiatry and psychopathology 310
Unfinished business 3: the corporeal problem 311
Unfinished business 4: conventional forms
of treatment 312
Caveats and other possible interpretations 313
Footnotes to Chapter VIII 317
BIBLIOGRAPHY
APPENDICES:
Appendix i Introductory letter to
prospective informants, letter of consent,
advertisement for informants.
Appendix ii Portrayals of IBD in mass
communication: some examples from inter
national and local print media.
Appendix i ii Vital statistics concerning
concerning hospitalization of related
cases in British Columbia: communication
from the Provincial Ministry of Health
ix
ACKNOWLEDGEMENTS
I would like to thank my informants for providing me their time,
patience and trust. I hope that they w i ll not be too disappointed with my
conclusions regarding the question they all asked me, which was to do with
the business of making sense of suffering. It is also clear to me that I owe
a debt of long standing to those who showed me the exciting promise of
anthropology and particularly to Professor David Bettison, who was teaching
at Simon Fraser University in the years when I was a student there. With
respect to the production of this particular piece of work, I would like to
acknowledge the encouragement and criticism afforded me by my friend and
colleague Terry McCann. I would also like to thank all those who were
willing to tolerate my preoccupation with the subject matter of this thesis,
in general conversation and in more focussed discussion of 'matters
anthropological'. My thanks are also due to my committee members Professors
Elvi Whittaker, Marie-Francoise Guedon and Helga Jacobson, and to other
members of the department who assisted me in my attempts to understand other
people's struggles to make sense of what too often appears to be a bizarre,
confusing and alienating world of communication in modern contemporary
Western society.