UBC Theses and Dissertations

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UBC Theses and Dissertations

Inflammatory bowel disease as a cultural artifact : an ethnography of the politics of suffering Foulds, John Simon 1984

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INFLAMMATORY  BOWEL D I S E A S E OF T H E  AS A CULTURAL POLITICS  OF  ARTIFACT:  AN  ETHNOGRAPHY  SUFFERING  by JOHN SIMON B.A.  (Hons), M.A.,  A THESIS  FOULDS  Simon F r a s e r  Simon F r a s e r  SUBMITTED  University,  University,  IN PARTIAL  REQUIREMENTS  DOCTOR OF  1971  FULFILMENT  FOR THE DEGREE  1969  OF  THE  OF  PHILOSOPHY in  THE F A C U L T Y (Department We a c c e p t  this  of  thesis  as  Anthropology conforming  THE U N I V E R S I T Y ©J.  OF G R A D U A T E  STUDIES  and to  OF B R I T I S H  Simon F o u l d s ,  Sociology)  the  required  COLUMBIA 1984  standard  In p r e s e n t i n g requirements  this thesis f o r an  of  British  it  freely available  agree t h a t for  Library  shall  for reference  and  study.  I  f o r extensive copying of be  h i s or her  g r a n t e d by  f i n a n c i a l gain  shall  not  be  eU>>  7  of  The U n i v e r s i t y o f B r i t i s h 1956 Main Mall V a n c o u v e r , Canada V6T 1Y3  of  Columbia  make  further this  thesis  head o f  this  my  It is thesis  a l l o w e d w i t h o u t my  permission.  Department  the  representatives.  copying or p u b l i c a t i o n  the  University  the  s c h o l a r l y p u r p o s e s may  understood that  the  I agree that  permission by  f u l f i l m e n t of  advanced degree a t  Columbia,  department or for  in partial  written  ABSTRACT This thesis illness  i s an a n a l y t i c a l ethnography  of the e x p e r i e n c e of c h r o n i c  i n the contemporary s e t t i n g o f a modern Western s o c i e t y .  s u b s t a n t i v e d a t a i s presented accounts  response  i n the form of more or l e s s extended  from a number of u n r e l a t e d i n d i v i d u a l s r e c o u n t i n g and  upon t h e i r  s i t u a t i o n . This i s data c o l l e c t e d  to a p u b l i c i s e d  particular  local  interest  area who  The narrative  reflecting  from v o l u n t e e r i n f o r m a n t s , i n  i n c o n t a c t i n g informants from w i t h i n a  had been diagnosed  as s u f f e r i n g  from  inflammatory  bowel d i s e a s e (IBD). The  initial  focus was  r e c o n c i l e d themselves which was  l i m i t e d to t r y i n g to determine how  to the b i o m e d i c a l i n t e r p r e t a t i o n of t h e i r  known t o be d e s c r i b e d as a c h r o n i c and  u n c e r t a i n e t i o l o g y , and  f o r which t h e r e was  sometimes f a t a l  what i s (or was)  In f a c t ,  i t suggests  social  is  evidence that  authority.  that  the  their  an a p p r e c i a t i o n o f  i n t h e i r response  t o the c o n s t r a i n t  F o r , i m p o r t a n t l y c o n t a i n e d i n many o f these  a r o u t e to s e l f - h e a l i n g can be found  r e p u d i a t i o n o f m e d i c a l knowledge and treatment, more autonomous mode o f s e l f - u n d e r s t a n d i n g . most dramatic  The  wrong with them l i e s much more i n the domain o f t h e i r  h a n d l i n g o f the symbolism of s e l f h o o d and of  syndrome, of  f o r some of the informants  c h a r a c t e r o f t h e i r c o n d i t i o n s i s not adequately subsumed by  r e c e i v e d medical knowledge.  condition,  no e s t a b l i s h e d c u r e .  ethnographic m a t e r i a l , however, r e v e a l s that full  individuals  and  i n the  accounts  active  i n the development of a  T h i s p o s s i b i l i t y stands  as the  i m p l i c a t i o n o f the ethnography,  and one moreover that  has  continued to elude many of the informants who  go on s t r u g g l i n g with  their  pathology.  The deployed  t h e s i s then endeavours so d i f f e r e n t i a l l y  to show how  and why  c u l t u r a l knowledge i s  among a s m a l l c o l l e c t i o n o f i n d i v i d u a l s h a v i n g a  particular physiopathological distress,  as they c o n s t r u c t meaningful  i n t e r p r e t a t i o n s o f what i s wrong with them.  At t h i s  level,  they c o n s t r u c t  that meaning from i n f o r m a t i o n gleaned from experience as a p a t i e n t hands of m e d i c a l and s u r g i c a l p r a c t i t i o n e r s ;  from o t h e r o f t e n l o n g - s t a n d i n g  r e l a t i o n s h i p s i n which they f r e q u e n t l y tend to view themselves o b j e c t s of wider insistent  s o c i a l conventions and b e l i e f s ;  focus here i s on the dominant i d e a s brought meaning o f i l l n e s s  and  concern the symbolism i n t e r p r e t a t i o n s of The  i n some cases from  w i t h i n t h e i r own  an  appears to  bodies.  The  to bear i n r e f l e c t i n g on the  the nature o f s e l f h o o d , e s p e c i a l l y those ideas that and r h e t o r i c of b i o m e d i c a l v e r s u s p s y c h o s o c i a l  illness.  s y s t e m a t i c e l u c i d a t i o n of the p o i n t s of l i n k a g e between d i s e a s e  p r o g r e s s i o n , and i n the d a i l y importance  i t s attendant s u r g i c a l  i n t e r v e n t i o n s , w i t h concurrent events  l i v e s o f the i n f o r m a n t s , s t r e s s e s , at another  of a c t s o f i n d i v i d u a t i o n and  Here the t h e s i s i s concerned which a c t i o n s r e f l e c t p r o j e c t i o n s of t h e i r  level,  a c t i o n s that promote self-knowledge.  the r e l a t i o n between a sense of i d e n t i t y and s e l f h o o d made by s i g n i f i c a n t  others i n t h e i r  the lives,  themselves.  i n t e r t w i n i n g of these two  r e f e r e n c e t o the n a r r a t i v e s ,  the  p r i m a r i l y w i t h the c r i t i c a l l y d i f f e r e n t ways i n  excluding medical p r a c t i t i o n e r s The  and  simply as  d i s c o r d between those c o n t r u c t s and the knowlege that  emanate from the s e l f - d e s t r u c t i v e happenings  at the  l e v e l s of experience, i l l u s t r a t e d  by  allows f o r the development o f a t h e o r y that  not  iv offers  reasons  recover. careers  It of  summarily eventual  why  is  and how  argued  these  release  as  from  controls.  It  work  generates  diagnosis. this  the  is  It  pattern  that  one  is  also  which  argument  existence  of  the  biomedical  logic  and  acted  and  inhibits  regaining  of  upon,  which  health.  same  is  and that  made as  learning  a  that  is  symptoms.  already process,  and  in  the  for  learning.  the  the  further  remedy  the the  can  be  formal control of  social is  impersonal  is  syndrome,  behaviour reducing  in the  of  sought. acounting  a rationalization  individual  at  consequences  an e t h n o m e d i c a l 1  explains  and  physiological  else  ideally  acceptance  'product , for  This  and  informal  or  illness  authoritative  which  maladaptive thus  embodied  of  provides  And  sick,  from  the  for  a cultural  be  maintenance  and  allows it  to  form of  pattern  symptoms  categorizes  reinforces  the  the  syndrome  treating  a history  restraint  the  continue  generation,  sickness  produces  an  way  the  suggested  Finally,  particular  of  that  the  is  representing  emotional  argued  individuals  there  informants,  described  which  some  sufferer, once  other  for of this  accepted settings  possibility  of  a  TABLE  OF  CONTENTS  ABSTRACT  v  i i  Chapter I  INTRODUCTION: Introduction The  The  and  production  Home-made Ex  Scope  the  production  and v a l i d a t i n g  The of  the  thesis: of  initial  home-made for  2  of  10  links  12  continued:  choosing 15  curiosity  argument  and  to  7  beliefs  missing  a thesis  questions  17  the  presentation  data  Footnotes II  argument  a methodology  price  analytical the  a  search of  Aims  general  critiques  libris:  Paying  of  and  18 Chapter  I  27  A C Q U I R I N G A FORMAL E D U C A T I O N  31  Introduction  32  The m e d i c a l  definition  of  IBD  33  The e t i o l o g i c a l p r o b l e m : p h y s i c a l , psychological pathogenesis? The g a s t r o e n t e r o l o g i c a l interpretation: psychosomatic etiology refuted? R e c o n c i l i a t i o n of perspectives: i l l n e s s is stressful  42  Crohn's  disease:  a separate  44  A wider  context:  the  Footnotes  to  Chapter  promise II  issue? of  epidemiology  35 38  45 49  Chapter III ESTABLISHING  FINDING  INFORMANTS  50  Introduction  51  Theory Terms  advises of  the  methodology  interview  IBD i n f o r m a n t s influences  in  IBD  initial  sufferers:  Footnotes IV  vi A METHODOLOGY A N D  to  a  55  contract  local  57  context:  local 58  Chapter  observations  62  III  MAKING ANTHROPOLOGICAL  66  SENSE  OF A  CRUCIAL  ACCOUNT A  69  fieldwork  "Sarah":  intention  a crucial  Reflections  on  A double-bind Illness IBD:  The  first  interview  informant  resolved  possible  the  in  and  83 therapy?  formal  knowledge  analytical  to  of  value  the of  86 personalizing  the  Chapter  IV  process  87  conversion  phenomenon Conversion, social contexts, moral rules and a x i o m s o f t h o u g h t R e f l e x i v i t y , r e i f i c a t i o n and IBD as a cultural artifact Footnotes  84  connections  diagnosis:  70 74  an a c c o u n t  experience  Discarding  and  88 89 91 95  Chapter V T H E N A T U R A L H I S T O R Y OF S U F F E R I N G 1 . C O N V E R S I O N AND I T S R A M I F I C A T I O N S Introduction The c o n v e r t e d . Putting i l l n e s s behind E m o t i o n a l i t y , p e r s o n a l i t y and s o c i a l o r g a n i z a t i o n : the b a s i s for a theory Footnotes VI  THE  to  NATURAL  HISTORY  VACILLATION Footnotes VII  to  SOCIAL  Footnotes  them  V OF  Chapter  SUFFERING  to  SELF  159 212  SUFFERING  AND T H E  Chapter  3.  BODY  213  VII  287  CONCLUSIONS Illness  as  288 learning  Emotionality Social  and  contexts  Selfhood  and  291  Selfhood and  the  296  Selfhood  medical  297  context  Unfinished  business  1:  Unfinished  business  2:  Psychiatry  and  Unfinished  business  3:  the  Unfinished  business  4:  conventional  of  302  epidemiology  307  psychopathology corporeal  310 problem  and  Footnotes  to  311  forms  treatment  Caveats  148  2.  VI OF  97 98 100  158  AND L I M I N A L I T Y  THE NATURAL H I S T O R Y SELF,  VIII  Chapter  v i i  312 other  possible  Chapter  VIII  interpretations  313 317  BIBLIOGRAPHY  APPENDICES:  Appendix  i  Introductory  prospective  informants,  advertisement  Appendix  for  ii  national  and  Appendix  i i i  concerning cases from  in the  letter  some  local  of  examples print  Vital  consent,  in  from  statistics of  Columbia:  Provincial  IBD  mass  inter-  media.  hospitalization  British  of  to  informants.  Portrayals  communication:  letter  Ministry  concerning related  communication of  Health  ix ACKNOWLEDGEMENTS  I  would  patience  and  conclusions the  of  Simon  respect  to  general  and  the  of  people's confusing  McCann.  Western  those  of  I  My  the this and  t o make  alienating  too  disappointed  with  asked  me,  which  It  is  also  me  the  when I  like with  assisted of  due  was  the  to  thank  what  too  all  I  of  modern  owe  like  to  and  were  this  thesis,  'matters members and  to  appears  I  With  friend  of  with  teaching  would  who  my  of  there.  matter  attempts  in  that  those  my c o m m i t t e e  communication  me  who w a s  work,  discussion  often  to  me b y my  subject  i n my  do  promise  and H e l g a J a c o b s o n , me  to  a student of  time,  was  clear  Bettison,  piece  to  me t h e i r  exciting  afforded  focussed  Guedon  of  David  criticism  also  sense  world  be  particular  also  are  who  not  showed  years  i n more  thanks  providing  all  Professor  would  and  department  society.  they  who  to  in  will  for  suffering.  Marie-Francoise  struggles  they  my p r e o c c u p a t i o n  conversation  and  to  of  encouragement  tolerate  the  that  sense  production  the  informants  question  University  Whittaker,  members  the  my  particularly  anthropological'. Elvi  hope  standing  Terry  to  thank  making  Fraser  colleague  in  I  long  acknowledge  willing  trust.  of  anthropology at  to  regarding  business  a debt  like  Professors  to  other  understand to  be  a  other  bizarre,  contemporary  1  CHAPTER  Introduction:  I  Scope  and  Aims  " T h e c h i e f d e f e c t o f a l l m a t e r i a l i s m up t o now ( i n c l u d i n g F e u e r b a c h ' s ) i s , t h a t the o b j e c t , r e a l i t y , w h a t we a p p r e h e n d t h r o u g h our senses, i s understood o n l y i n the form o f t h e o b j e c t o f c o n t e m p l a t i o n ; b u t n o t as s e n s u o u s human a c t i v i t y , as p r a c t i c e ; not subjectively. Karl Marx, The German  Theses on Ideology  Feuerbach,  2 Introduction This which also  and g e n e r a l  thesis  is  individuals a study  brought  of  on t h e  actually  suffering  because  ignores of  adherence  context  i n which  are  backgrounds, ways,  this  a piece  and w o r k  known as  of  their  that of  to  in his  fails  to  illness.  bowel is  My and  c a n be c o n s i d e r e d as own s o c i e t y ,  structure  assist  in  is  denied to  of medical  the  relief  of  disease the  This  and  modern  principal Canadian  in  In  many  the  and  an  sense  a certain  thought this  is  o f human  an e x a m p l e o f  specifically  is  that  definitions  took p l a c e  in  It  which  that metropolitan environment.  institutional  likely  illness.  chronic  Columbia.  u n d e r s t a n d why g o o d h e a l t h  and how t h e o r more  in  t h e ways  culture,  inflammatory  British  of  dimensions of  and l i m i t e d  investigation  o f work w h i c h  'studying up'  m a k i n g an a t t e m p t  assists,  of  to  important  context,  E n g l i s h - s p e a k i n g men and women o f E u r o p e a n  anthropologist  people  this  the Lower M a i n l a n d  who l i v e  is  peculiar  to p a r t i a l  cultural  of  sufferance  and o b s c u r e s  in question is  society  the  cultural  u n d e r s t a n d i n g and t r e a t m e n t  illness  informants  of  a specific  The  urban  of  in  a t t a c h meaning to  knowledge  the  a study,  the m e d i c a l knowledge,  to bear  nature.  argument  of  group  practice  specific  form  suffering.1 My i n t e r e s t  i n c o n s i d e r i n g the  d i s s e r t a t i o n was  simply  by  of  the  existence  t h e r e was which  said  t o o k me,  disease  try  and u n r a v e l  a particular  chronic  t o be no known m e d i c a l first  epidemiological bowel  to  r e s e a r c h which  as  of  all,  literature  which  a pathology  deals  illness  into  with  led  to  this  a c h a l l e n g i n g problem represented  solution.  on a s e a r c h  eventually  i n my own s o c i e t y , It  became  an  for  which  investigation  the b i o m e d i c a l , p s y c h i a t r i c  the  phenomenon o f  inflammatory  o c c u r r i n g w i t h i n Western s o c i e t i e s .  But  more  and  3 importantly,  i t became a search which brought me  the s u f f e r e r s themselves, from whom I was testimonies  able to e l i c i t  of e x p e r i e n c e gained as p a t i e n t s .  i n d i v i d u a l s , I suggest that there  informants have been l e d to b e l i e v e i t was,  i s not  simply  selfhood,  of the  a mechanistic  i n t e r p r e t a t i o n and  and  not  i n h i g h l y p r i v a t e and important entirely  and  social  work. informants l i e s what i s  i n v a r i a b l y g i v i n g r i s e to an e f f o r t ,  be met.  success,  to f i n d reasons why  illness  syndrome, and  i n the p r a c t i c e of d i a g n o s i s  and  one  treatment.  that  informants'  deductive  model of a n a l y s i s .  almost the  and  meaning  explicit,  accounts i n l a r g e l y u n e d i t e d  r a t h e r than condense or fragment them to s u i t elaborated  f a r the most  I t i s because of  o r g a n i z a t i o n of t h i s seemingly p r i v a t e world of p e r s o n a l to o f f e r my  of  those  i s missed  importance which I a t t a c h to making the c o n t e n t , c o n s t r u c t i o n  that I d e c i d e d  self  T h i s r e f l e x i v e s t r u g g l e , which i s c a r r i e d on  o f t e n s e c r e t i v e ways, i s , I suggest, by  component o f the  and  organization  a u t h o r i t a r i a n view of the o b l i g a t i o n s of the  degree of commitment and  o b l i g a t i o n s should  fundamental v a l u e s  s o c i a l r e l a t i o n s h i p s and  i n t e r p r e t e d world of my  to the moral demands of o t h e r s , different  aberration  a part of the o v e r a l l  found i n the  i n the c u l t u r e i n which these informants l i v e  clearly  the  what a l l my  namely a b i o p h y s i c a l  o r g a n i z a t i o n of l i f e - e x p e r i e n c e s , which i n t u r n m i r r o r  the c e n t r e  and  evidence to show that  symptoms form o n l y  c o n d i t i o n , the r o o t s of which are to be  At  accounts  with  Rather, i t can be viewed as a h i g h l y complex syndrome  i n which p h y s i o - p a t h o l o g i c a l  s t r a t e g i e s regarding  into contact  In the n a r r a t i v e s of these  i s important  c o n d i t i o n known as inflammatory bowel d i s e a s e  of m y s t e r i o u s o r i g i n s .  eventually  form,  the purposes of a more h i g h l y  4  For ease o f e x p o s i t i o n i n making sense o f these n a r r a t i v e s , or i l l n e s s c a r e e r s , ^ and i n order t o make a c e n t r a l p o i n t o f argument c o n c e r n i n g them, I group them as examples t o f i t a t r i p a r t i t e model o f c o n s c i o u s n e s s and physical status.  My argument i s that the morbid symptoms o f the p h y s i c a l  m a n i f e s t a t i o n s o f inflammatory  bowel d i s e a s e are c o r r e l a t e d d i r e c t l y with the  success or f a i l u r e o f the i n d i v i d u a l t o overcome the i n s i s t e n t  demands o f  o t h e r s t h a t he/she conform t o r i g i d performances o f s o c i a l r o l e s , mostly w i t h i n the domains o f k i n s h i p , marriage t o g e t h e r , these accounts  and c o u r t s h i p .  found  Taken  o f i l l n e s s c a r e e r s can be seen as a k i n d o f progress  i n the s t r u c t u r i n g o f s e l f h o o d , i n the f a c e o f s u b v e r s i v e p r o c e s s e s from both w i t h i n and without symbolic  the ego.^  a c t i o n s and r e f l e x i v e e f f o r t ,  established,  afforded that  through  s e l f h o o d i s c o n t i n u o u s l y c r e a t e d and  and i n terms o f my i n f o r m a n t s ' l i v e s t h i s process  s p e c i f i c p r e o c c u p a t i o n as t o the extent significant  I take the p o s i t i o n t h a t  stemming  involves a  t o which the c l a i m s made by  o t h e r s to have power and a u t h o r i t y over the i n d i v i d u a l should be  l e g i t i m a c y , and t h e r e f o r e be acceded  t o or d e n i e d .  I suggest  then,  i n a p a r t i c u l a r way, a l l my informants have s i m i l a r e x p e r i e n c e s i n  dealing with a u t h o r i t y .  I f u r t h e r suggest  to the s u f f e r a n c e and r e s o l u t i o n o f i l l n e s s symptomatology, although  the l a t t e r  t h a t these e x p e r i e n c e s  are l i n k e d  i n terms o f p h y s i c a l  f a c t o r i s complicated  somewhat by the  s u r g i c a l removal o f c e r t a i n o f f e n d i n g p a r t s o f the i n d i v i d u a l ' s anatomy. n a t u r a l h i s t o r y o f the symptomatology i s best understood  The  as i n v o l v i n g a  s e r i e s o f f a i r l y d i s c r e t e s t a g e s , each c h a r a c t e r i z e d by the occupancy o f one of t h r e e types o f e x p e r i e n t i a l s t a t e s d e s c r i b e d i n my model. The  first  s t a t e or c a t e g o r y i s e x e m p l i f i e d by those i n d i v i d u a l s who  5 have addressed lives  themselves  and who have found  d i r e c t l y t o the s t r u c t u r i n g o f s e l f h o o d i n t h e i r i t an a p p r o p r i a t e r o u t e t o h e a l t h t o make dramatic  and  f a r - r e a c h i n g changes i n c o n s c i o u s n e s s , which I t y p i f y as ' c o n v e r s i o n ' .  The  second  s t a t e o r c a t e g o r y i n c l u d e s those i n d i v i d u a l s who c o n t i n u e t o be  q u i t e i l l , who spontaneously fundamental find of  p o i n t t o the problems a s s o c i a t e d w i t h making  changes t o t h e i r c o n s c i o u s n e s s , but who do not y e t seem able to  the means t o do so.  whom are c h r o n i c a l l y  The t h i r d c a t e g o r y c o n t a i n s those i n d i v i d u a l s , some i l l and some o f whom have r e c e i v e d r a d i c a l  surgery  which appeases t h e i r p h y s i o p a t h o l o g y , who are s e v e r e l y t r o u b l e d by present and past events  i n their  l i v e s , but seem q u i t e unable t o r e s o l v e them.  Now what these s t a t e s o f c o n s c i o u s n e s s and t h e i r a c q u i s i t i o n means i n terms o f h e a l t h o r i l l n e s s  i s a crucial  issue i n t h i s thesis.  I t would seem,  from the accounts o f s u f f e r i n g which my informants o f f e r , that t h e c o n s t r u c t i o n o f a p a r t i c u l a r k i n d o f s e l f h o o d , or t h e f a i l u r e t o do so, p r o v i d e s a fundamentally that  important key to unlock the cage o f s u f f e r i n g , i n  i t might w e l l b e g i n t o e x p l a i n not o n l y the g e n e s i s o f p h y s i o p a t h o l o g y ,  but o f f e r reasons  f o r i t s p e r p e t u a t i o n and u l t i m a t e r e s o l u t i o n .  hope o f e s t a b l i s h i n g an i n s i g h t o f t h i s k i n d which f i r s t pursue my r e s e a r c h and one which I c o n s i d e r to be j u s t practical ramifications rightfully,  I t was t h e  prompted me t o  as important  in its  as i t i s a p r o b l e m a t i c a l i s s u e t o be addressed,  I would m a i n t a i n , from an a n t h r o p o l o g i c a l p o i n t o f view.  N e v e r t h e l e s s , the q u e s t i o n s which can be r a i s e d a n t h r o p o l o g i c a l treatment demand a t t e n t i o n .  o f these l i f e  about  the proper  e x p e r i e n c e s are f a s c i n a t i n g and  Paramount among these q u e s t i o n s , i n my o p i n i o n , i s the  matter o f the d i s j u n c t i o n between b i o m e d i c a l knowledge and the knowledge to  be gained i n the e x p e r i e n c e o f c u l t u r a l with the problem  life.  of t r y i n g to e x p l a i n why  T h i s i n t u r n has  many of my  c l i n g to a biomedical explanation of t h e i r s u f f e r i n g a mysterious  and  of t h e i r  A g a i n , and  and surgeons, how  illness  i n terms o f the posture o f m e d i c a l  i s i t p o s s i b l e to account  patients-as-complainants accounts o f d o c t o r - and informants?  f o r the almost  practitioners  total  lack of  e x p e r i e n c e i n which  l i v e and work, a viewpoint which i s r e v e a l e d i n the s u r g e o n - p a t i e n t r e l a t i o n s h i p s o f f e r e d by  What can be s a i d  susceptibility  about  to inflammatory  my  the e p i d e m i o l o g i c a l p a t t e r n of  bowel d i s e a s e , i n that t h e r e i s evidence to  some c a t e g o r i e s of person are more at r i s k than o t h e r s ?  p o s s i b l e t o c l a i m that b o d i l y pathology  If i t is  i s a c o r r e l a t e of u n s u c c e s s f u l  to put a p p o s i t e symbolic c o n s t r u c t s of s e l f h o o d i n t o p r a c t i c e ,  what can be s a i d about  the  ' p r o p h y l a c t i c ' or  circumstances  then  ' t h e r a p e u t i c ' s e l f as an  adaptive mechanism i n a modern c u l t u r a l c o n t e x t ?  to t h i s  i n terms of s e e i n g i t as  and r e p u d i a t e i t i n favour of a  concern f o r , or a t t e n t i o n to the wider world of l i v e d  attempts  informants choose to  s o c i o s o m a t i c model, which i n t u r n seems to o f f e r a methodology o f  self-healing.  show that  coupled  d i s e a s e , r a t h e r than doing what o t h e r informants do, which i s t o  d i s c a r d the disease-model psycho-  to be  F i n a l l y , what broad  are t h e r e , h i s t o r i c a l l y or s o c i a l l y , which serve as impediments  process?  To many o f these q u e s t i o n s I can o f f e r o n l y a p a r t i a l  answer, but I do  endeavour to d e a l w i t h them as f a r as p o s s i b l e w i t h i n the l i m i t s o f t h i s dissertation.  I t must be s a i d that  d i r e c t l y , or i n d i r e c t l y , how  i n many ways, my  t o go about  answering  informants  reveal  these q u e s t i o n s .  have the e x p e r t i s e , as members of t h e i r c u l t u r e , to t h e o r i z e about  They their  7 circumstances: account  for  suffering social  in  the  and  treatment  institutions  produce  my o w n  experiences In other viewing  to  by  in  world  which  'to  figure  and  at  find  this  ways  social ways  as  a  I  first  The  production became  illness  and  to  actions  begin  of  the a  which  to  a debate it  thesis:  affect  some the  is of  also  an  not  the  are  want  so many to  people.  ways  other  of  and  and  their  lives,  trick  which  Geertz  up  should  to'. I  attention  draw in  in  the  all,  in  the  culture  and  an  disease  a process,  of  to  sociology  bowel  to  theories  popular  of  my  that,  attempt  to  the  perform,  Beyond  to  most  and  common  other  know e a c h  inflammatory  artifact  the  related  portrayed But  and  to  knowledge,  enterprise  a modern  initial years  about  which  can be  the  together  with  illness  they  link  an  anthropologists  culture. an  accounts  to  as  particular  sociological  as  function,  with  perform  is  my  and  their  think  I  which  themselves  what  disease  that  life-style  curious,  is  change.  bowel  that  to  notions  enculturation  people  who do  and b e l i e f s  considered  premise,  by  try  (people)  social  be  to  with  upon w i d e r  contributes  want  generated  of  their  these to  of  see  individual  individuals  is  absurdities  I  frequency  dealing  devil  drawing  feasibly  and  I  the  through.  facetiously  inflammatory  which  could  knowledge, has,  what  organization  the media which  rather  which  in which  among  and  general,  the  sophisticated  process  themselves  to  about  highly  the  their  in  represent  go  to  live  how,  contribution  level  in  they  of  offer  disjunctions  and b r i n g  occurs  suggests out  they  illness  pointing  they  anthropological (1983:60)  try  account  words,  of  which  actually  the  cases  discrepancies,  anthropologist,  means  many  effort of which  produced  in  society.  questions  ago,  intestines  as  to  the  and w h i c h  nature bring  of  two  related  forms  varying  degrees  of  8 pain  and m i s e r y  diarrhoea. people  to  There  whom I  the  seemed or  knew  to  as  they  referred  which  fall  under  Some  particularly experienced denoted  by  the  causes  treatment  to  the  In  this  sense,  were  was  own p r o p e r  functioning. of  what  of  the  diagnostic  of  the  physiopathological  attempts links  me t h a t to  with  promise  break  very  literature  this out  the more  on  much, the  a  of  to  the the  general  which  subject.  theory body  to  could  and  bowel  facts  of  disease  1  of  circumstances,  physicians be  were  both  were  their  not  of  illnesses  disease',  basic  and  attributed  to  any  recognizably  exhibited  itself  was  realm  of  which  was  there  typical was  meaning  doing  to  was  be  a  were  clearly  no  features,  course  of  assured  of  from  the  in  the  vocabulary  the  at  Now a l t h o u g h all  explanation,  the  did  myself  biomedical  description  my to  not  to  its  best  of  work.  to  the  summation  tautological, the  by  inimical  that  contained  restricted  away  offered  something  human e x p e r i e n c e ,  when I  To move  of  them was  circularity  particularly  of  symptoms  appeared  processes  the  the  number  cure.  happening  argument  these  illnesses  from  dysfunctions  large  'inflammatory  by various  be m y s t e r i o u s  that  category,  offered  from  'Crohn's  definition  distress  Patients was  apart  physical to  or  these  the  according was  of  uncontrollable  increasingly  of  although  promise  explanation,  to  of  acknowledged  wrong,  interpretation  biomedical  organic  pattern  could  people,  categories  that  biomedical  seemed  these  form of  suffering  label  features  the  an  colitis'  diagnostic  The  diagnostic  which  What  distinctive  in  time,  who w e r e  'ulcerative  the  the  usually  that  about,  was  and  and at  general  ill-health.  cause.  familiar, the  of  be,  the  disturbing  specialists, known  to  knew,  which  (IBD).^  sufferer,  initial find  seem  the and  it  some to  available biological  paradigm, or t o f i n d of  some broader  a route out of i t which might  determinants  q u e s t i o n of s u s c e p t i b i l i t y , unsupportable were m i s s i n g . found  elements of d i r e c t i n g i n f o r m a t i o n  the metaphor, t h e r e was  always some comfort  f a c t i c i t y of a f a u l t y metabolism, of t i s s u e f a i l i n g under  At the same time, t h i s c h a r a c t e r i z a t i o n appeared a masquerade, d e f i c i e n t and  nature.  adaptation. What pretends  to be  t o be almost  the  stress.  certainly  i n l o g i c and u n r e l a t e d to the b a s i c f a c t s of human  No  event  i n nature i s unconnected to other events i n  to be an explicandum,  i n the form of the b i o m e d i c a l  d i a g n o s i s , seemed more and more t o be an e x p l i c a n s .  Inflammatory bowel  d i s e a s e began to a c q u i r e the s t a t u s of a phantom, which I f e l t demystified.  the  always seemed t o lead i n t o some swamp of  i n r e t u r n i n g to the d r y land of b i o l o g i c a l p o s i t i v i s m and accept  undeniable  life  establishment  of o c c u r r e n c e , or even throw some l i g h t on  c o n j e c t u r e , where c r i t i c a l To extend  lead to the  I suspected  t h a t i t was  had  to be  no more than a l a b e l to r a t i o n a l i z e  v a l i d a t e a p a r t i c u l a r mode of treatment.  I t was  at t h i s p o i n t , which  o c c u r r e d r o u g h l y at the same time as I was  d e v e l o p i n g an i n t e r e s t  anthropology,  an i n v e s t i g a t i o n of a problem  existing  i n my  that I f e l t own  I should attempt  and  c u l t u r e as i f I were u n d e r t a k i n g  i n medical  an ethnography i n some  l e s s f a m i l i a r c o n t e x t , where the a n t h r o p o l o g i s t i s made aware of the v i r t u e s of  adopting  a form o f innocence  and t h e r e f o r e becomes more open t o the  p o s s i b i l i t y of a c q u i r i n g r a d i c a l l y new mean to imply n a i v e t e .  Rather,  knowledge.  By innocence,  i t involves a conscious e f f o r t  I do not  to suspend, or  p l a c e b r a c k e t s around the e s t a b l i s h e d ' n a t u r a l a t t i t u d e ' of everyday T h i s i s what I was  prepared  the same time, however, t h i s  t o do as part of my  life.^  i n v e s t i g a t i v e s t r a t e g y . At  s c e p t i c a l and r e l a t i v i s t i c  approach  was  10  buttressed  by my  f i n d i n g s i n a growing body of s c h o l a r l y and  l i t e r a t u r e where the constructs cultural  argument i s made that  shaped d i f f e r e n t i a l l y  i l l n e s s and  popular  diagnosis  are  i n terms o f p a r t i c u l a r h i s t o r i c a l  and  contexts.  Home-made c r i t i q u e s of home-made b e l i e f s In the p h i l o s o p h y and  of m e d i c i n e , i n the  i n the more r e c e n t l y developed  field  sociology  i n t e r p r e t a t i o n s o f Western m e d i c a l b e l i e f s and the h i s t o r i c a l  knowledge, r e v e a l i n g that are  ideational constructs,  and  and,  When put  their  prospect  i n the sense that  the purposes of a p a r t i c u l a r a c t .  a h e a l e r ' s knowledge i s not of r e g a i n i n g h e a l t h ,  i s one  that d i a g n o s t i c  and  i t must o b l i g e the  realm o f  i t i s nevertheless  actor  derive ideas  I f the dependence of an  r e l a t e d to a n y t h i n g  e l s e apart  ill  from  a r e l a t i o n s h i p based on  the the  c l a i m to some a u t h o r i t a t i v e knowledge.  of the h a l l m a r k s of Western b i o m e d i c a l i n t e r p r e t a t i o n s of i l l - h e a l t h  of  thought i s no d i f f e r e n t from  beyond the c i r c u m s c r i b e d  t a c i t u n d e r s t a n d i n g of the h e a l e r ' s It  simply  a c t i o n i n terms of meaningful r a t i o n a l i z a t i o n s which  f o r c e from accepted v a l u e s  person on  o n l y and  judgement  i n which they are advanced  into p r a c t i c e , biomedical  forms of human a c t i v i t y ,  which a d v i s e  and p s y c h i a t r i c  are connected to other more b a s i c p r o t o c o l s  promoted.^  the  critical  p r a c t i c e s , which b r i n g i n t o  as such, are not  a c t i o n i n the c u l t u r a l context  to j u s t i f y  and  c u l t u r a l r o o t s of b i o m e d i c a l  thought and  other  illness  those most fundamental axioms o f c l i n i c a l  approximations of r e a l i t y , but  any  and  o f anthropology known as  ethnomedicine, i t i s p o s s i b l e to f i n d r e l a t i v i s t i c  sharp focus  of h e a l t h  should  b e l i e f and  practice  proceed through  l i n k a g e of a p a t i e n t ' s c o n d i t i o n to a d i s e a s e - c a t e g o r y ,  through  the  the  assessment of symptoms as d i s t i n c t i v e f e a t u r e s . b i o m e d i c a l b e l i e f - s y s t e m , t h e r e i s a l s o to be  Within  found  the nosology  of  the  a preponderance of  d i a g n o s t i c c a t e g o r i e s which p l a c e b i o l o g i c a l phenomena at the f o r e f r o n t of the i n t e r p r e t i v e p r o c e s s .  The  nomenclature of the taxonomic s t r u c t u r e , i n  t u r n , i s a nomencalature o f p a t h o l o g i c a l anatomy and metabolism. w r i t e r s have argued, one  As many  o f the major paradoxes i n modern b i o m e d i c a l p r a c t i c e  i s the e l e v a t i o n of d i a g n o s t i c c a t e g o r i e s to the s t a t u s of t h i n g s , entities',  and  t h i s tendency to r e i f i c a t i o n  g i v e n to the h e a l i n g a r t as the treatment than w i t h the c o n t i n g e n t suffering.^  what f a l l s  circumstances  is reflected  T h i s , one  emphasis  and p r e v e n t i o n o f d i s e a s e , r a t h e r  of an i n d i v i d u a l ' s e x p e r i e n c e  o u t s i d e the parameters of o r g a n i c pathology,  meaning e s t a b l i s h e d by d i a g n o s i s , can o f t e n be d i s m i s s e d phenomenon.  i n the  'disease  can r e f e r to g e n e r a l l y as  of i n the  as a s u b s i d i a r y  'illness',  which i n m e d i c a l  terms can take second p l a c e i n importance to the more l e g i t i m a t e meaning of pathology  communicated through r e f e r e n c e to e s t a b l i s h e d d i s e a s e - c a t e g o r i e s .  What ' i l l n e s s ' whatever not  ' i l l n e s s ' may  likely  curiosity  of s u f f e r i n g  and My  inflammatory  as to what these  interest  wrong w i t h  them.  'diseased' i s  in investigating  bowel d i s e a s e was  e x h i b i t i n g the  the  prompted simply  might be  and how  by  the  'symptoms' of  bowel d i s e a s e ' i n f l u e n c e d them i n d e c i d i n g and  that was  as  But  e x p e r i e n t i a l dimensions of what i t  ' i l l n e s s ' circumstances  i n f o r m a t i o n g i v e n to people  'inflammatory i t was  the d e f i n i t i o n s of a s i c k person  a person-with-a-disease.  circumstances  received  be,  to exhaust the e x i s t e n t i a l  means to be  my  i s , of course, begs a number of q u e s t i o n s . ^  a c c e p t i n g what  12 Ex  libris:  the  Before through  search  setting  the  out  literature  inflammatory  bowel  which  relevant  seemed  continued acquired of  the  search other  during a good  researchers  pieces  of  the  model  of  or  to  to  the  was  those  which  that  had  to  be  a very  focus  was  disease  the  were  gleaned  model  to  being  or  received, came  one.  completely the  to  refer  There adequate  consideration  psychiatric and  I  were  interpretations.  accepted  that  approximate  form of  which  a  I  was  ways. made  the  only  by  the  which  life  missing  after  I  began  particular and  the  their  exceptions  standpoint  possible  of  of  to  her  analysis,  only  this  some  therapeutic  However,  construction  that  that  f r o m my r e a d i n g  important  the  treatment  two  of  had  the  from the of  I  explored  in  of  of  which  In  with  between  acceptance as  and  from  some  this  knowledge  search  been  study  and  search  pathology  began.  if  a  informants,  significant  correspondence  based.  This  a  them away  essential,  I  the  pathology  Secondly,  which  my  have  an e t h n o g r a p h i c  found. close  taken  of  search  that  was  interviews  which might  began  surgical  about  this  I  conceptualization  and  recommend  others  the  understanding  authors,  although  when  and  interviewing  informants'  as  informants  I was  avenues  a prime  subjects,  information Although  about  time  of  bowel  construction  psychoanalytical  which  for  gastroenterological/surgical  who  other  characterization  were  inflammatory  circumstances  in  my c o n v i c t i o n  was  suffering  my e n t e r p r i s e .  results  there  my  for  practitioners  puzzle  upon which  and  any  my o w n b i o m e d i c a l  knowledge  patients  interviews,  interview  lookout  The  added  of  to  links  augment  biophysical  familiar. it  to  of  the  experiences  one  deal  on  to  period  I  First,  my  the  prior  was  missing  disease  syndrome  predominantly most  for  one  value of  'disease', which  they  my  of  13  developed  as part of a programme of s e l f - h e l p on t h e i r own  As I s h a l l informants who  illustrate  initiative.  i n the p r e s e n t a t i o n o f the e x p e r i e n c e s o f those  seem e i t h e r t o have r e c o v e r e d from t h e i r p h y s i c a l  or f o r whom those a f f l i c t i o n s  are minimized,  afflictions,  a t t e n t i o n to t h e i r c o g n i t i v e  p e r c e p t u a l h a b i t s , i n a r e f l e x i v e l y c r i t i c a l way,  and  pays d i v i d e n d s which are  l a r g e l y denied to those informants whose focus i s d i r e c t e d t o t h e i r p h y s i o p a t h o l o g y , or t o the g a s t r o e n t e r o l o g i c a l p h y s i o p a t h o l o g y as  such.  As I suggest, from my medical f r a t e r n i t y  i n t e r p r e t a t i o n of their  examination o f the l i t e r a t u r e ,  as to how  the o p i n i o n o f the  to go about d e a l i n g w i t h inflammatory bowel  d i s e a s e as a syndrome i s d i v i d e d r o u g h l y i n t o two camps: the g a s t r o e n t e r o l o g i c a l - s u r g i c a l view and the p s y c h i a t r i c view.  With  certain  r e s e r v a t i o n s which I do not wish t o pursue h e r e , t h e r e are good reasons  why  the p s y c h i a t r i c model has more to recommend i t as a p r o t o c o l o f treatment than the regimen based on m e d i c a t i o n and s u r g e r y , p a r t i c u l a r l y phases  of i l l n e s s .  In r e a d i n g about  i n the  initial  the apparent c o n t r o v e r s y between these  two camps, and the i n t e r p r e t a t i o n s made by p s y c h i a t r i s t s  as to what might  t y p i c a l of the p e r s o n a l i t i e s of inflammatory bowel d i s e a s e p a t i e n t s , I  be  was  i n t r o d u c e d to a somewhat more f a m i l i a r v e r s i o n of what an a n t h r o p o l o g i s t would r e c o g n i z e as a human b e i n g , that  i s , of an i n h a b i t e d body, and of some  r e c o g n i z a b l e i f perhaps  distorted  and p a r t i a l p i c t u r e s of p a t i e n t s '  c o n s c i o u s n e s s at work.  T h i s a s p e c t , I would suggest, i s almost  entirely  m i s s i n g from the g a s t r o e n t e r o l o g i c a l / s u r g i c a l p e r s p e c t i v e , which I present e a r l y i n the next c h a p t e r .  A l s o from the s y n o p t i c p o r t r a y a l s o f second-hand  accounts of p a t i e n t s ' behaviours and a t t i t u d e s i n those  psychiatric  14  interpretations,  i t i s p o s s i b l e to glimpse a view of animated s u b j e c t s , of  ill  persons l i v i n g  and  c l i n i c a l model, which addresses i t s e l f to the anonymous s u b j e c t , or  nothing but  social  lives.  the unknown bearer  By comparison with  the s t r i c t l y  of a form of p h y s i o p a t h o l o g y ,  the p s y c h i a t r i c  accounts are a step c l o s e r to our common sense understanding although  still  represented  to us as b e a r e r s  biomedical  of persons,  of forms, drawn mostly from  the  taxonomy of p s y c h i a t r i c pathology. With the a d d i t i o n of e p i d e m i o l o g i c a l i n f o r m a t i o n  i n the  literature,  t h e r e i s o f f e r e d the promise of coming even c l o s e r to an understanding what might l i e behind it  implies patterns  the  religious  r e v e a l s some i n t e r e s t i n g  questions.  but  Not  affiliation.  p s y c h i a t r i c models, i n that  T h i s i n f o r m a t i o n not  l e a s t of these  may  i s how  or why  c e r t a i n k i n d s of  e p i d e m i o l o g i c a l data  implies  point to a s o c i a l t h e o r y of c a u s a t i o n of pathology,  therefore also i s suggestive But  Any  again,  of the converse,  such s p e c u l a t i o n on my  which i n f o r m a t i o n  of e p i d e m i o l o g i c a l methodology.  of  extension prophylaxis.  l i m i t e d by the ways i n  In the end,  a l l t h r e e types the  of  injustifiable.  accounting,  epidemiological  inadequate because they were c i r c u m s c r i b e d  assumptions which I c o n s i d e r e d  incidence  c o n s t r a i n e d by the c a t e g o r i c a l i n d i c e s  the g a s t r o e n t e r o l o g i c a l / s u r g i c a l , the p s y c h i a t r i c and models proved t o be  belief, of  susceptibility,  and by  i . e . a theory  part I found to be  about s u b j e c t s was  and  d r a m a t i c a l l y r a i s e s some f a r - r e a c h i n g  forms of s o c i a l o r g a n i z a t i o n or a c t i o n might be connected to the inflammatory bowel d i s e a s e .  age,  only  l i n k s between the p r a c t i c e of epidemiology  a l s o immediately and  the  and  of s u s c e p t i b i l i t y based upon such f a c t o r s as gender,  e t h n i c membership and  anthropology,  formal b i o m e d i c a l  of  by  boundary  15  The  production of a t h e s i s continued: The  choosing  t a s k t h e r e f o r e which seemed to present  and v a l i d a t i n g itself  a methodology.  to me as a consequence  of r e a d i n g the l i t e r a t u r e was to t r y t o i n c o r p o r a t e those dimensions o f experience  which go beyond the c h a r a c t e r i z a t i o n s o f what was i m p l i e d by the  biomedical, p s y c h i a t r i c  and e p i d e m i o l o g i c a l data i n r e f e r e n c e t o a  person-with-a-disease.  I n t h i s e n t e r p r i s e I was hoping  sort o f r e s o l u t i o n to two q u e s t i o n s , both answered o n l y through o b t a i n i n g d e t a i l e d d i s c l o s u r e o f the contents The  first  i n f o r m a t i o n based on an and processes  q u e s t i o n had to do w i t h the meaning o f i l l n e s s  view of the knowing and e x p e r i e n c i n g s u b j e c t . as s u f f e r i n g  what degree d i d they symptoms?  of r e f l e x i v i t y . from the p o i n t o f  inflammatory  bowel d i s e a s e  and c h a r a c t e r o f m e d i c a l ,  i n t e r v e n t i o n i n which he/she had p a r t i c i p a t e d .  find  such i n t e r v e n t i o n a p p r o p r i a t e i n d e a l i n g w i t h  What aspects o f s u f f e r i n g were not addressed  and how was t h i s r e c o n c i l e d , or r a t i o n a l i z e d ? about p o s i t i v e or t h e r a p e u t i c changes? f e a r s d i d an informant  informant's  I was c u r i o u s t o know how an  would make sense, a d j u d i c a t e , and v a l i d a t e the type s u r g i c a l or p s y c h i a t r i c  some  o f which i t seemed would be best  o f consciousness  i n d i v i d u a l who had been i d e n t i f i e d  to accomplish  exhibit  To their  i n such i n t e r v e n t i o n  D i d the i n t e r v e n t i o n b r i n g  What k i n d o f e x p e c t a t i o n s , hopes or  r e g a r d i n g the nature  of i l l n e s s ,  and to what  extent were those hopes and f e a r s e s t a b l i s h e d i n the d i s c o u r s e between the patient  and the c l i n i c i a n or surgeon?  To what extent  d i d an informant  accept  the a u t h o r i t y o f the d i a g n o s t i c i a n , and, i f a p p r o p r i a t e , the i m p l i c a t i o n s and r a m i f i c a t i o n s o f the disease-model o f i l l n e s s ? T h i s g e n e r a l q u e s t i o n i s the most immediate and p r e s s i n g s i n c e i t d e a l s d i r e c t l y with what marks these  s u f f e r e r s o f f from other people.  But c l e a r l y  16 this of  question  this  is  period  relationships The  illness the  to  links  in  the  lives,  or  pertinent.  Above  of  their  convincing in  the  suffering,  was  clear  these  questions  which  I  could  relationship  to  of  which  psychosis stress,  syndrome.  at  I  an  least for  became and  was  to  unwilling  of  some  partially such  they  sort,  expected  was to  and m e a n i n g who m i g h t  so,  relief,  and  which  who I  from  sense  their  i l l  and  the  accept,  made  to  that  might  well  have  found  play  a  be a way  offer  not  at  by  likely  could  to  onset,  find  had  the  locate  circumstances  informant  make  social  might  psychopathology  also  to  partly  or  communication for  arising  in which  I  how  many m o r e  informants  those  symptoms.  that  account  in  of  which  stands  studying  the  of  the  kind  of  information  only  come  as  a consequence  apprised  of  an  fully trust  I  approach  that  could  be  an a p p r o p r i a t e  type  their  hoped or  in  of  personnel.  again  circumstances  the  I  therefore,  issue  include  medical  the  out-of-awareness all,  with  make b e t w e e n  of  of  will  ways  suspected  evidence  which  general  some  encountered  literature.  It  ways  might  etiology  unconscious  out  to  more  the  attributions but  the  established  do w i t h  they  the  to  question,  remission  psychiatrists, part  to  which  value,  those  general  had  or  unrelated  autobiography,  than  their  recurrence face  in  other  literature,  not  came  and m u t u a l to  justify  strategy. in  social  analysis  in  marked  In  of  chapter  In  methodology  chapter  contrast  'causes' that  that  to  of  I  I  adopting  chapter of  attempt  discuss  conclude  require  to  that  three,  personal t o make  help  answer  a methodology  consciousness,  the more w e l l  illness. and  would  informant's  confidence. the  I  in I  a  discuss  interviewing clear  how  this  tradition  this  social  it  is  ultimately  not  the as  established second  by  of  factor much  of I  an go  advance on  to  suggest,  theoretical  and  anthropology collect  in methodology  to  condition general  and  for  my i n f o r m a n t s  suffering would  and  normally  be  clarification  or  elaboration.  I  informants and  that  their  guarantee  take  and  place.  Paying  material  caution these  in  not  a letter  (Appendix of  turning  and  to  been  elicit  an  a  to  it  prepared  confirming  the  be  the  an  on  intent  was  of  their  more  to  them  which  points  discrepancies  in  discursive  aspect  confidential.  I  documents, under  of  to  their was  assure  prepared  the  of  my  circumstances  a letter  which  to  their  questions  procedure  was  their  prepared  of  my  from  meaning  I  that  as  ethical  terms  my  to  to  such  any  two  the  the  say  suffering  reality  such  to  that  related  conversation,  was  me w a s  as  the  adopted  here  listener.  direct  clear-cut  authority  I  be  defined  focussed  with  might  I  in  from them what  to  only  that  suffice  diagnosed  of  especially  t h e mode  will  illness  me h o w t h e y  of  and  straightforward,  determined  any  It  to  some  above.  to  outlining  interview  my  would  curiosity to  the I  which  discussed  i)  elaborate  contained  interviews,  it.  who h a d  and  decided  anonymity.  regarding  simple  resolution  was  of  possible  discussion  the.price  Before the  I  their  intentions  the also  that  sense  tell  asked  in  linked  was  as  ways  is  and how t h e i r  to  the  experience,  I was  as much  three,  approach  anthropology,  disease  life-context.  epidemiological  of  make  them  the  approaches  individuals  bowel  had  to  approach  some  inflammatory  allow  personal  my d a t a  interview  chapter  practical  of  methodological  in  on  in  the  little  narratives  character  had  a  occasion  of to  the be  more which  on I  the  very  collected,  phenomenological shocked,  general I  data.  disgusted  and  want  sketch to  of  offer  I n many  of  outraged  at  a  18 what the  I  heard  nature  and what  of  many  bowel  disease,  I  all.  To e n t e r  the  are  radically  world that  is  to  informants' the  well  my f o r t y - p l u s  wounded The  young  of  terms  offered  a  struggle  others  with  is  began  of  entail  the  illness be  to  the  interpreted  the  process  characterizations  with  characterizations  which  of the my  understood  any  of  to  for and  project  sense  of  there  is  some  more  and more  clear  or  other  to  of  to  medical  what  might  I  have to  have  aid  my  individuals  expend  experience  of  vision  suffering, had  added,  affecting  some  I  that  empathetic  example,  which  at  experiences  fundamental,  the  to  keep  known  mortally  data  and w h i c h and as  a  I  regarding  the  have  out  struggle  and  to  an a u t h e n t i c  refer  laid  autobiographical in  characterizations  have  informants  If  collected  developed  self-understanding, need  whose  and make  beforehand  inflammatory  on t h i s  increasingly  effort  have  careers  can  connect  I  known  service.  disease  pari-passu  suffering  c a n be  pain  presentation I  of  establish  and how, of  had  embark  the m i n i s t r a t i o n  which  bowel  try  to  As  almost  my m i l i t a r y the  to  with  The  than  I  human b e i n g s  shock  see  advice.  and  of  to  If  culture-shock.  that  many y e a r s  argument  that  chosen  attempt  to  including  argument  have  own a n d  of  might  inflammatory  above,  is  I  experience  equilibrium.  taxing  years,  analytical  suffering  would  a degree  spared  more  the  a genuine  men d u r i n g  analytical The  least  appropriate was  of  comprehend.  consciousness  emotional  been  to  from one's  framework  been g i v e n more  in  of  experiences,  have  I  consequences  one's  my o w n c o u n s e l  facets  effort,  the  explanatory  might  at  forced  that  world  suffer  of  the  doubt  sense-making  whole  of  different  understanding, the  I was  to  are  experience in  general  material  reflexivity. of  self  reconcile identity.  voiced  and  made  which It  by  these The  acted  out  by  is  19 s i g n i f i c a n t o t h e r s i n the primary group, world o f m a r r i a g e , k i n s h i p and the i n d i v i d u a l  i s inclined  i n the f a c e - t o - f a c e and i n t i m a t e  c o u r t s h i p : they are p r o j e c t i o n s of s e l f which  to a c c e p t , because they are accompanied by  a u t h o r i t a t i v e e x p e c t a t i o n that the i n d i v i d u a l w i l l r a t h e r than as h y p o t h e t i c a l i m p e r a t i v e s . 9  But  c e r t a i n o b l i g a t i o n s to a c t , t h i n k , behave and p r o j e c t i o n s , a l l my  see them as  themselves  f e e l a c c o r d i n g to these i n consciousness  to d e a l w i t h emotional and/or s e x u a l forms of  s e l f - e x p r e s s i o n which run counter to these o b l i g a t i o n s . o t h e r s the r i g h t  categorical,  i n a t t r i b u t i n g to  informants have d i s c o v e r e d c o n f l i c t s  a r i s i n g from t h e i r attempts  the  In d e f e r r i n g to  to d e f i n e the n a t u r e o f t h e i r s e l f h o o d , or i n s e e k i n g  l e g i t i m a t e grounds upon which such d e f e r e n c e might be denied, the s t r u g g l e to find  an anchorage f o r the s e l f which promises  i s one which seems r e f l e c t e d body.  The problem  inhibited  i n the e r r a t i c  i s compounded by the f a c t  peace o f mind and  and morbid  authenticity  f u n c t i o n i n g o f the  that the i n d i v i d u a l seems  from communicating the n a t u r e of t h i s s t r u g g l e to almost  and v e r y r a r e l y , or w i t h g r e a t d i f f i c u l t y  to the person or persons  anyone, identified  as the source o f the p r o j e c t e d c h a r a c t e r i z a t i o n s . A f f e c t i o n combined w i t h resentment, face of p e r c e i v e d i n j u s t i c e ,  are themes which are interwoven  descriptions of physical s u f f e r i n g . coterminously r e l a t e d consciousness. some i n d i v i d u a l s  the e x p e c t a t i o n o f j u s t i c e i n the with  The b o d i l y symptoms are c o n t i g u o u s l y and  to the focussed r e h e a r s a l of such themes i n  N e v e r t h e l e s s , the r e s o l u t i o n of t h i s c o n f l i c t and the reward  i s to be found  symptoms, which can be a p p a r e n t l y complete,  i s achieved by  i n the r e m i s s i o n of  or almost  so.  depends on a s u b s t i t u t i o n o f a h u m a n i s t i c c o n s c i e n c e f o r an  The  their  resolution  authoritarian  20 one,10 in  which  social  involves  relationships.  illustration positional  of  from  (1964,  1970)  conditions  the of  attitude the  for  the  disease  conveyed seen  in  illness  in the  informants' to  of  her  the  self  the she  considering  as  of  dealing  the  cogency  of  of  illness.  model  crucially  important  identity had  of  learned  whose  and  to  to  clear  that  herself  as  and  validity In  of  my  attention  informants  to  share,  which  others,  person.  message  was  seems  and  transposition  with  the  Sarah,  It  the  the  draw  I  Bernstein  states.  I  a  which  terms  contexts,  explanatory  informant  suffering,  place,  this  a diseased  regarding  of  affective  social  from  by  the  'converted'  novel  an  adopting  acknowledge  my  accounts.  which  in  In  to  takes  as  and  provide  s h i f t . ^  new w a y s  implied  dynamics  discard  processs,  the  to  produced  and  and  styles  a concept  justify  w h i c h my  gastroenterological  case  and  of  of  viewpoint  and  behind  structure  was  of  the  however,  self,  to  conversion  ontological  adoption  interpretation  transformation bowel  their  of  examine  a movement  (1978).  emotional  exposure  I  affective  free  relationships  their  view  and  as  socialization  feels  experiences  which  understood  upon by D o u g l a s  authentic  important,  and  familial  in which  similar  'occasion' as  social  of  best  individual  ways  importance  Just  in  the  attitudinal  a personalized  of  and more  remarkably  the  the  their  of  to  of  transposition,  seems  elaborated  view,  emergent  the  self  analysis  and  of  discussion  of  the  personalized  This  conversion,  view  borrow  their  a transposition  my  model about  account  adopted  as  of the  This of  is  how  interpretation step  fundamental  the  is  a  change  inflammatory person most  part  her  the my  her of  clearly  put  of of  in  object-exemplar a  is  she  my u n d e r s t a n d i n g  a necessary the  This  of  other recovery  a  disease of  her  21  s o c i a l i z a t i o n as a p a t i e n t . which shows how that a v e r y selfhood  she b e n e f i t e d  important  I t i s i n her  from an experience  i s s u e i s r a i s e d concerning  c o n s t r u c t i o n and  diagnosis  upon her  and  only  as an e l i g i b l e w i f e , but  also  explanation  to the q u e s t i o n  of her  of meaning w i t h r e s p e c t  because i t i s t y p i c a l l y presented  t h e r e f o r e , beyond any  l a t t e r model c o u l d w e l l  to p e r s o n a l  psychosocial  a u t h o r i t a t i v e l y as a c h a i n  address  model of  i n any way  an  disease  of and,  i t to dependent s t a t u s . independent  i n such a model have  f o r the onset, or  symptoms to which the d i s e a s e model r e f e r s .  I t negates  perpetuation subjectivity  Behaviour of the body becomes  status.  In essence, the epistemology of the disease-model i s m e c h a n i s t i c refers only  as  circumstances,  of consciousness  patients believing e x p l i c i t l y  themselves r e s p o n s i b l e  has  the  i n s t e a d d e a l s with her  Because the b i o m e d i c a l  In  i n f l u e n c e which the p a t i e n t might have to a l t e r i t ,  there are no reasons why  paramount and  suffering.  i l l n e s s which does not  p h y s i o p a t h o l o g i c a l events o c c u r r i n g independently  relegates  her  o f her pathology, Sarah s t r e s s e s  s u b j e c t i v i t y , but  object of diagnostic i n t e r e s t only.  and  as p a r t of  c o n t r i b u t o r to the p r o l o n g a t i o n o f her  a b s u r d i t y of c l i n g i n g to a v e r s i o n of her  of the  healing^  For not  the ways i n which acceptance of the  d i s c a r d i n g the b i o m e d i c a l  to c o n s i d e r  and  treatment based on the g a s t r o e n t e r o l o g i c a l / s u r g i c a l model.  have been an i n d i r e c t  i s devoid  first,  the r e l a t i o n s h i p between  p r o j e c t i o n a u t h o r i t a t i v e l y conveyed to her  T h i s p o i n t s up  itself  of symbolic  the r o l e of s u b s t i t u t i v e judgement.  d i d she disavow the i d e n t i t y pressed the symbolic  account which I present  to the body component of the C a r t e s i a n d u a l i t y .  with knowledge which focusses  e n t i r e l y on  and  When s u p p l i e d  the b o d i l y d y s f u n c t i o n ,  the  patient  22 l e g i t i m a t e l y a c t s towards the body as separate and morbid f u n c t i o n s are understandable out'.  o n l y as a d i s e a s e process  each o t h e r i n a c o n s t r u c t e d symbolic account  and  from the accounts  'working  itself  these domains are i n s u l a t e d  sense.  of o t h e r s who  But  i t seems c l e a r from  have experienced  from  Sarah's  conversion, that  i s a b s o l u t e l y i m p e r a t i v e t h a t a c o n n e c t i o n be made between  s e l f - c o n s c i o u s n e s s and  symptomatology, a t h e o r e t i c which n e c e s s a r i l y i n v o l v e s  a d i s v a l u i n g of the disease-model contains. treatment  In e f f e c t ,  and  the message about the s e l f which i t  i t would appear t h a t the e x p e r i e n c e of d i a g n o s i s and  d e f l e c t s a t t e n t i o n away from the p r o d u c t i v e p o t e n t i a l o f making the  k i n d s of c o n n e c t i o n s which might l e a d to c o n v e r s i o n . ^ clear.  The v e r y knowledge which the p a t i e n t seeks  h i m / h e r s e l f and person,  and  i n my  paradox i s  a p p r o p r i a t e s to  i s d y s f u n c t i o n a l to the k i n d of r e f l e x i v e e f f o r t which o t h e r s see as  d i s c u s s i o n of those informants who  chronically  from  disease-model  illness  still  symptoms, b e l i e f  i n the v e r a c i t y o f the  can be taken as an index, and  even as a p r e d i c t o r , o f the We  some c o r r e l a t i o n between the maintenance of b e l i e f  (and the a p p r o p r i a t e n e s s of m e d i c a l the presence  with o t h e r s .  and  of u n r e s o l v e d c o n f l i c t  As I t r y to i l l u s t r a t e  c o r r e l a t i o n seems to e x i s t .  In f a c t , as I argue  s u f f e r c o n s i d e r a b l y and  chances they have f o r r e c o v e r y from the p a t h o l o g y . find  The  then uses as the means of s e l f - i d e n t i f i c a t i o n as a d i s e a s e d  l e a d i n g them toward h e a l t h , o r the r e c o v e r y of h e a l t h .  and  and i t s  There i s then e s t a b l i s h e d a s i t u a t i o n i n which the p a t i e n t t h i n k s of  s e l f as a person + a body + a d i s e a s e , and  it  apart from thought  surgical  would then expect i n the  i n the p r e s e n t a t i o n of my  Furthermore,  disease-model  i n t e r v e n t i o n and  c o n c e r n i n g the s e l f ' s  to  treatment)  relationship data,  t h e r e are, as I suggested  this above,  23 three f a i r l y d i s t i n c t  formulations o f experience r e f l e c t e d  i n the natural  h i s t o r y o f s u f f e r i n g , where the s t r u c t u r e and dynamics o f s e l f - s y m b o l i z a t i o n r e v e a l v a r i a t i o n s o f the b a s i c themes o f i n s i g h t f u l n e s s i n t o the n a t u r e o f a p a t i e n t ' s view o f i l l n e s s . In the attainment  o f an a u t h e n t i c sense  o f s e l f h o o d , which f o l l o w s on  from the c o n v e r s i o n e x p e r i e n c e , i n d i v i d u a l s not o n l y f i n d themselves discount  able t o  i n a p p r o p r i a t e c h a r a c t e r i z a t i o n s o f t h e i r s e l f h o o d , but a l s o c u t  communicative t i e s w i t h any person or persons who p e r s i s t s i n making characterizations.  This effort  r e m i s s i o n o f symptoms.  such  seems t o be rewarded i n t h e form o f a  T h i s process  i s accompanied and interdependent  with  the r e l e g a t i o n o f the g a s t r o e n t e r o l o g i c a l model to a s u b o r d i n a t e s t a t u s i n the h i e r a r c h y o f meaning f o r the i n f o r m a n t s .  F o r them, the v a l u e o f  s u b j e c t i v i t y i s r e g a i n e d and the body i s understood consciousness.  I n c h a p t e r s four and f i v e ,  i n d i v i d u a l s who f a l l  into this  as answering t o  I present t h e accounts of  category.  There are other i n f o r m a n t s , d e a l t w i t h i n chapter s i x , who can be seen to be i n an i n t e r m e d i a r y phase o f t h i s o n t o g e n t i c or a c c r e t i v e T h e i r main p r e o c c u p a t i o n i s the e f f o r t justifications  foralleviating  t o make attempts  process.  t o f i n d reasons and  their equivocating attitudes  about  themselves,  a t t i t u d e s which a r i s e because o f d i s j u n c t i o n s between the ways i n which they intuitively  feel  they should a c t and the ways i n which the p r o j e c t e d v e r s i o n s  of them made by o t h e r s i n s i s t  that they should f e e l and a c t .  They can be  seen t o be doing t h i s by t r a c i n g and r e - t r a c i n g p o s s i b l e l i n k a g e s between stressful and  events, and e s p e c i a l l y e m o t i o n a l l y charged  events, and the onset  c o n t i n u i n g r e c u r r e n c e o f t h e i r d i a r r h o e a and other symptoms.  At the same  24 time, they make e f f o r t s to s o l v e the problem presented  by the  biomedical  meaning of t h e i r s u f f e r i n g when c o n t r a s t e d w i t h events which they b e a r i n g some c o n t r i b u t o r y r e s p o n s i b i l i t y f o r t h e i r s i c k n e s s . informants, who  and  a n x i e t y nor cut  communicative t i e s which b i n d them to those who of t h e i r c o n f u s i o n . and  they  the  i d e n t i f y as the  source  N e i t h e r do they seem able to make the leap of  a t t a i n the c o n v e r s i o n i n s e l f h o o d r e v e a l e d by Sarah  o t h e r s i n her c a t e g o r y .  And  although  the b i o m e d i c a l treatment  they have r e c e i v e d has not been p a r t i c u l a r l y symptoms, and  experiences  These  t h e i r r e l a t i o n s h i p s with o t h e r s , n e v e r t h e l e s s do not  seem able to r i d themselves of t h e i r g u i l t  their  as  seem to be q u i t e aware of the d e t r i m e n t a l e f f e c t s of t h e i r  v a c i l l a t i o n concerning  understanding  see  and  and  surgery  s u c c e s s f u l i n r e l i e v i n g them of  they have been degraded and  o f t e n abused i n t h e i r  as p a t i e n t s , they r e t a i n t h e i r f a i t h ,  i n v a r y i n g degrees,  i n the  b i o m e d i c a l g a s t r o e n t e r o l o g i c a l model of d i s e a s e . In chapter  seven,  whose consciousness structure: self,  I t u r n to the p r e s e n t a t i o n of accounts  can be viewed, h e u r i s t i c a l l y ,  s o c i a l s e l f and b o d i l y s e l f .  bioscientific  i n t e n t i o n s are a p p a r e n t l y i n s u l a t e d  more c l e a r l y than  attention.  i n t e n t i o n s , s o c i a l l y sanctioned  consciousness What might  from each o t h e r .  Here,  i t i s p o s s i b l e to  s o c i a l i z a t i o n i n c r e a t i n g a form of  s e l f - r e f e r e n c e as a d i s e a s e d person, which dominates the r e f l e x i v e D e s p i t e the f a c t  be  i n t e n t i o n s and  i n the other c a t e g o r i e s o f i n f o r m a n t s ,  see the r o l e p l a y e d by b i o m e d i c a l  individuals  a tripartite  These aspects of  are seen to be competing f o r p r i o r i t y of focus and r e f e r r e d to as primary  as h a v i n g  of  that these are e x a c t l y the same themes of  o b j e c t i f i c a t i o n and m a n i p u l a t i o n by o t h e r s which are found  process.  degradation, i n a l l the  25 autobiographies, despite  the  the  made  by  sources  from  to  of  them,  authority  themselves attitude  the  declarations  projections and b y  and  of  of  these  resentment  they  others  by  these  be  so  seem  to  that  they  those  they  accuse  of  authority  thus  appears  projections  cannot  take  find  the  of  by  the  conduct  on  remarkably  informants  fascinated  improper  to  are  the  their  means  toward  character  similar;  treatment  to  disengage  them. of  Their  disobedient  dependence. In  reviewing  category, whereby might  my  the  come  based  t h e n moves  This  principles  healed, then  or  leads  offer  and  some  in  to  the  of  with  a brief  review  upon  in  the  of  particular  t o make  regarding  inflammatory  back  individuals account  to  to are both  do by  which  sense  my d a t a .  on  those to  of  the  bowel  cultural the  bowel I  susceptible  to  structural  and  to  work  for  fall  grounds  domains  back  chapter,  the  of  into  and  the  thought  who  third  circumstances and  psychodynamic  those  careers  for  occurrence,  the  context  is  attempt  produced,  I  action  and  consider  review  pathology  ideological  some  and  change  develop  my  an  disease  incidence cultures,  interviews in  of  the  the  the  in  the  i n modern  and together and  took  more  this  Here,  acted place.  literature  reasons  relate  argument  informants.  interpreted  obtained  refer to  of  Western  i n w h i c h my  information and  in  I  bowel  illness  syndrome  the  in which  inflammatory  disease  disease  also  who  so.  explanations  of  to  encountering  how t h e  the  separated  appeared  of  informants  consider  referring  my c o n c l u d i n g  inflammatory  endeavour  points  I  of  apparently  praxis  tentative  perpetuation  of  virtually  o n my e x p e r i e n c e s  literature I  argument  about.  themselves  experiences  integration  sociodynamic  This  the  salient  why  certain  explanatory societies.  In  I  26 this the  regard, broader  I  the  in  I  the  also  in  cultural  deals  regarding  to  deal  and  illness  experience  be  playing If  illness  is  inflammatory  confirming  built  large,  nature best  of  which  the  offered  biomedicine,  role  the  of  shapes  and  to  might  and  chapter,  I  account  for  psychiatry  and  be  argue  its in  of  the  of in  be  those  scalpels. explore  is  (Appendix  inflammatory epidemiology.  of  the  bowel  a  which  authority final  as  In  the  a  collapsing  data  science  of  may  in  fact  pathology.  the  relating of  to  fiscal  problem  and  of  This  research  is  accompanied  communication fearful  whose  in  moral  effort  presented  social  paramount  manner  expenditure  the  of  with  maladaptive  categories,  experts  some  a  syndrome.  endorse  which  the  disease  the  compounding  professional to  of  research  the  work  me t o  taking  biomedical  diagnostic  disease, by  in  considerable  fact  the  circumstances.  and  that  personal  the  bowel as  the  the  leads  understood  perpetuation  deal  is with  This  psychosocial  opinion  with  disease  inflammatory  understanding  public bowel  of  the  character  dealt  steroids  next  in  interpretation  that  particularly  must  I  with  form of  made h e r e  phenomenon  a great  disease,  inflammatory  principally  been  of  confronted  In  account,  resources,  upon  suggest  a single  then,  a partial  a consistency at  so,  bowel  organizational  effort,  into  in  bowel  and  versus  exemplified  relationships.  maladaptive  into  positional  argument  authority  I  a significant  this  the  production  which  the  organization  ascribed  the  to  inflammatory  with  with  disease  of  and  artifact,  invention  social  recapitulate  intimate  discussion  of  sufferance  individual  vested  my r e f e r e n c e s  theories  theorists. theme  link  as  and and  a  the  media  intransigent  'condition'  armamentarium  consists  i i ) . interpretations  disease  as  by  which  a pathology  have in  27 FOOTNOTES  TO C H A P T E R  I  1.  T h e r e i s a s e n s e t h a t i t i s n o t e n t i r e l y a p p r o p r i a t e f o r an a n t h r o p o l o g i s t t o b e u n d e r t a k i n g a n e t h n o g r a p h y a t home when t h e r e a r e more e x o t i c w o r l d s t o e x p l o r e . In her a r t i c l e from which t h i s perhaps u n f o r t u n a t e p h r a s e i s t a k e n , L a u r a N a d e r a r g u e s , 'We a n t h r o p o l o g i s t s h a v e s t u d i e d t h e c u l t u r e s o f t h e w o r l d o n l y t o f i n d i n t h e end t h a t o u r s is one o f t h e most b i z a r r e o f a l l c u l t u r e s and o n e , by v i r t u e o f i t s w o r l d i n f l u e n c e f o r ' b a d ' or ' g o o d ' i n urgent need of s t u d y ' . Nader, L., 'Up the A n t h r o p o l o g i s t - P e r s p e c t i v e s Gained from Studying Up' i n Reinventing A n t h r o p o l o g y D. Hymes ( e d ) . V i n t a g e B o o k s , R a n d o m H o u s e , New Y o r k 1 9 7 4 : 284-311.  2.  I use the term i n the sense t h a t H o r a c i o Fabrega has d e f i n e d i t , 'The t e m p o r a l l y p a t t e r n e d b e h a v i o u r s and t r a n s a c t i o n s t h a t f o l l o w f r o m t h e d e f i n i t i o n t h a t someone i s i l l . This term designates a chain of b e h a v i o u r , m e d i c a l t r e a t m e n t c o n v a l e s c e n c e , e t c . , e n d i n g when the illness and m e d i c a l c a r e e p i s o d e d r a w t o a ' n a t u r a l ' c l o s e ' . Fabrega, H., ' M e d i c a l A n t h r o p o l o g y ' B i e n n i a l Review of A n t h r o p o l o g y V o l . 7, 1971: 167-229.  3.  The ego i s o f c o u r s e a s y m b o l i c c o n s t r u c t . I use f i g u r a t i v e way o f p o r t r a y i n g r e f l e x i v i t y . One o f a p p r o a c h i s t h e w o r k o f G . H . M e a d , M i n d , S e l f and Chicago P r e s s , Chicago 1934.  4.  W i t h i n t h i s c a t e g o r y I c a n i n c l u d e my o w n p a t e r n a l g r a n d f a t h e r , together w i t h m o r e r e m o t e f i g u r e s s u c h as ( b y some r e p o r t s ) t h e p r e s e n t Governor-General of Canada. The C a n a d i a n F o u n d a t i o n f o r I l e i t i s and C o l i t i s e s t i m a t e s t h a t t h e r e may b e 2 0 0 , 0 0 0 p e o p l e i n C a n a d a , i n a l l age groups, with severe bowel disease. As many as h a l f o f t h e s e a r e b e l i e v e d to have ostomies - a r t i f i c i a l openings for the removal of waste products through the abdominal w a l l because a l l or part of the colon has been removed. Viz. ' S e v e r e bowel d i s e a s e s a f f e c t one p e r s o n i n 100, are on t h e i n c r e a s e ' , T o r o n t o G l o b e and M a i l , M a r c h 2 2 n d , 1 9 7 9 . I t o u c h on the q u e s t i o n of epidemiology i n chapter two.  5.  T h i s i s n o t t o be i n t e r p r e t e d as t h e a d o p t i o n o f a p r e s u p p o s i t i o n l e s s p e r s p e c t i v e i n the sense of empty-headedness. Rather, i t i s to t r y to see t h i n g s as i f t h e i r s t a n d a r d c h a r a c t e r i z a t i o n was n o t i n h e r e n t . In t h e n a t u r a l a t t i t u d e o f e v e r y d a y l i f e , as S c h u t z p o i n t s o u t , individuals a r e c o n c e r n e d m e r e l y w i t h some a s p e c t s o f a n y p a r t i c u l a r t y p i f i e d object. S c h u t z , A . , C o l l e c t e d P a p e r s V o l 1: ' T h e P r o b l e m o f S o c i a l R e a l i t y ' , M. N a t a n s o n , ( e d . ) , M a t i n u s N i j h o f f , The Hague, 1967: 7 - 9 .  t h i s p h r a s e as a t h e i n f l u e n c e s i n my Society, University of  28 F r o m an h i s t o r i c a l and p h i l o s o p h i c a l p o i n t o f v i e w , one c o u l d cite F o u c a u l t , M . , The B i r t h o f t h e C l i n i c : An A r c h e o l o g y o f M e d i c a l P e r c e p t i o n t r a n s . A . M . S h e r i d a n S m i t h , P a n t h e o n , New Y o r k , 1 9 7 3 . As s o c i o - p o l i t i c a l p r a c t i c e , B u l l o u g h , V . , The Development o f M e d i c i n e as a P r o f e s s i o n , H a f n e r P u b l i s h i n g , New Y o r k 1 9 6 6 . As a t r a n s c u l t u r a l phenomenon, K l e i n m a n , A . , P a t i e n t s and H e a l e r s i n t h e C o n t e x t o f Culture U n i v e r s i t y of C a l i f o r n i a P r e s s , B e r k e l e y , 1980, e s p e c i a l l y pp 2 4 - 7 0 . The e t h n o m e d i c a l p o s i t i o n i s f l u e n t l y a r g u e d by F a b r e g a , H . , i n h i s essay, 'The Scope o f E t h n o m e d i c a l S c i e n c e ' i n C u l t u r e , M e d i c i n e and P s y c h i a t r y 1, 1 9 7 7 : 2 0 1 - 2 2 8 . This question of d i s e a s e - r e i f i c a t i o n occurs i n almost every d i s c u s s i o n of Western medical p r a c t i c e . F o r one o f t h e most s u c c i n c t and f o c u s s e d r e v i e w s o f t h e q u e s t i o n , see W a r t o f s k y , W . M . , ' O r g a n s , O r g a n i s m s and D i s e a s e : Human O n t o l o g y a n d M e d i c a l P r a c t i c e ' i n H . T . E n g e l h a r d t and S . F S p i c k e r , ( e d s . ) , E v a l u a t i o n and E x p l a n a t i o n i n t h e B i o m e d i c a l Sciences D. R e i d e l P u b l i s h i n g , Dordrecht, 1975: 67-83. Also Foucault, M., op. c i t . ; for a b r i e f review of the h i s t o r i c a l development of the concept, see I l l i c h , I . , 'The I n v e n t i o n and E l i m i n a t i o n o f D i s e a s e ' in h i s M e d i c a l N e m e s i s , B a n t a m B o o k s , New Y o r k , 1 9 7 7 : 1 5 1 - 1 6 9 . The b e s t critique is arguably contained in G.L. Engel's article, 'The need f o r a new m e d i c a l m o d e l : a c h a l l e n g e f o r b i o m e d i c i n e ' , i n S c i e n c e , V o l . 196, No. 4286, 8 t h A p r i l , 1977:129-135. An e n q u i r y i n t o t h e s e m a n t i c i s s u e s i n v o l v e d i n d e a l i n g w i t h the d i s t i n c t i v e d i f f e r e n c e s b e t w e e n ' d i s e a s e ' and ' i l l n e s s ' w o u l d e n t a i l a d i s c u s s i o n of major p r o p o r t i o n s . The terms l a c k p r e c i s i o n . Illness tends t o be used t o r e f e r t o what i s wrong w i t h t h e p a t i e n t , d i s e a s e t o what i s wrong w i t h t h e b o d y . I n some r e s p e c t s , t h i s f o r m u l a t i o n h a s merit. As R e a d i n g p o i n t s o u t , ( R e a d i n g , A . , ' I l l n e s s and D i s e a s e ' , a symposium paper on P s y c h i a t r y i n I n t e r n a l M e d i c i n e , The M e d i c a l Clinics o f N o r t h A m e r i c a v o l 6 1 , No. 4 , J u l y , 1977) i l l n e s s can be c o n t r a s t e d t o disease i n terms of p a t i e n t s ' experiences v s . p h y s i c i a n s ' apprehensions, symptoms v s . s i g n s , s u b j e c t i v i t y v s . o b j e c t i v i t y , u n i q u e n e s s v s . r e p l i c a b i l i t y , n o n - v e r i f i a b i l i t y vs. consensual v a l i d a t i o n , affecting the w h o l e p e r s o n v s . a f f e c t i n g d i s c r e t e p a r t s , and so o n . But t h e r e are c l e a r l i m i t a t i o n s inherent i n such c a t e g o r i z a t i o n which can lead to the p a r a d o x i c a l s i t u a t i o n i n w h i c h ' i l l n e s s ' i t s e l f c a n become r e i f i e d , or typified. I t i s o n e o f t h e a r g u m e n t s o f my t h e s i s t h a t , i n t h e patients' view, ' i l l n e s s ' may b e w h o l l y r e p r e s e n t e d as t h e s u f f e r a n c e of t h e ' d i s e a s e ' , p a r t i c u l a r l y when t h e b o d y i s v i e w e d as an o b j e c t . One of t h e c r i t i q u e s o f t h e s o c i o l o g y o f i l l n e s s i s t h a t e n q u i r y p r o c e e d s on t h e a s s u m p t i o n t h a t what s h o u l d be i n v e s t i g a t e d i s t h e p a t i e n t s response t o ' d i s e a s e ( s ) ' when t h e l a t t e r i s c o n s i d e r e d as a r e a l i s t i c e n t i t y , and the ' f a c t s ' of i l l n e s s are the s o c i a l l y d i f f e r e n t i a t e d responses to a c o n d i t i o n w h i c h i s e v e r y w h e r e t h e same. This leaves biomedical d e f i n i t i o n s o f r e a l i t y unexamined o r g l o s s e d and t a k e n f o r g r a n t e d . See  29 F a b r e g a , H . , 1977: 214. Also a c r i t i c a l review of Talcott Parsons' medical sociology with respect to t h i s question, in E.L. Idler's article, ' D e f i n i t i o n s o f H e a l t h and I l l n e s s and M e d i c a l S o c i o l o g y ' , in S o c i a l S c i e n c e and M e d i c i n e , V o l . 13A, 1 9 7 9 : 7 2 3 - 3 1 . For medical a n t h r o p o l o g y and e t h n o m e d i c a l e n q u i r y t h e p r o b l e m i s even more a c u t e : in the absence of d i a g n o s t i c c a t e g o r i e s t y p i c a l of Western b i o m e d i c i n e , e t h n o g r a p h e r s c a n be c o n f r o n t e d w i t h i l l n e s s symptoms i n o t h e r cultures w h i c h may b e r e c o g n i z a b l e as ' d i s e a s e s ' i n a W e s t e r n c o n t e x t , b u t w h i c h a r e e x p l a i n e d and c l a s s i f i e d q u i t e d i f f e r e n t l y by n a t i v e informants. S e e , f o r an e x a m p l e o f a W e s t e r n p h y s i c i a n and a n t h r o p o l o g i s t dealing w i t h t h i s q u e s t i o n , H. C a w t e , M e d i c i n e i s t h e L a w , S t u d i e s in P s y c h i a t r i c Anthropology of A u s t r a l i a n T r i b a l S o c i e t i e s , University P r e s s of H a w a i i , H o n o l u l u , 1974. A l s o Good, B . J . , 'The heart of what's t h e m a t t e r : t h e s e m a n t i c s o f i l l n e s s i n I r a n ' i n C u l t u r e , M e d i c i n e and P s y c h i a t r y 1, 1 9 7 7 : 2 5 - 5 8 , and a h o s t o f o t h e r ethnomedical ethnographies. T h i s i s not to suggest that p a t h o l o g i e s i n non-Western c u l t u r e s a r e w i t h o u t names, o r g o , as i t were u n r e i f i e d . E v a n s - P r i t c h a r d , f o r example, wrote of the Azande: "In such cases, the d i s e a s e h a s t o be d i a g n o s e d and named and a s p e c i f i c remedy a p p l i e d . T h i s v e r y naming and i d e n t i f i c a t i o n o f t h e d i s e a s e o b j e c t i f i e s and g i v e s i t a r e a l i t y o f i t s own i n d e p e n d e n t o f w i t c h c r a f t . . . " i n h i s w o r k , W i t c h c r a f t , O r a c l e s and M a g i c among t h e A z a n d e , C l a r e n d o n P r e s s , O x f o r d , 1937:508. I n my o w n s e a r c h o f t h e e t h n o g r a p h i c l i t e r a t u r e , I a t t e m p t e d t o f i n d e x a m p l e s o f t h e t y p i c a l symptoms w h i c h m i g h t i n d i c a t e , t o a Western d i a g n o s t i c i a n , the presence of inflammatory bowel d i s e a s e . The m o s t l i k e l y i n s t a n c e among t h o s e i s t h a t o f " w i t n a r o k " , t h e name g i v e n b y t h e A k a w a i o o f t h e G u y a n a h i g h l a n d s , t o r e f e r t o i n f l a m m a t i o n and u l c e r a t i o n o f t h e l o w e r c o l o n and r e c t u m , w h i c h i s b e l i e v e d by them t o be brought about by s o r c e r y . The ' i l l n e s s ' component i n v o l v e s 'feeling p a i n a l l o v e r ' , and ' f e v e r ' . See C o l s o n , A . B . , ' B i n a r y o p p o s i t i o n s and t h e t r e a m e n t o f s i c k n e s s among t h e A k a w a i o ' , i n S o c i a l A n t h r o p o l o g y and M e d i c i n e ASA Monograph 1 3 , J . B . L o u d o n , ( e d . ) , A c a d e m i c P r e s s , L o n d o n , 1976:422-499. Less s p e c i f i c a l l y i n terms o f symptoms, but r e l a t e d t o t h e a r g u m e n t o f my t h e s i s , i s h o w r e g u l a r l y s y m p t o m s o f s t o m a c h d i s t r e s s and sometimes d i a r r h o e a a r e r e l a t e d t o s o u l l o s s due t o f r i g h t . In Chontal s o c i e t y f o r example, the r e s p o n s i b i l i t y f o r b r i n g i n g about such symptoms i s found i n t h e a c t i o n s o f o l d e r men, whose ' n e g a t i v e c h a r i s m a ' i s e x e m p l i f i e d i n the c o e r c i v e power they have over younger p e o p l e t h r o u g h t h e u s e o f t h r e a t e n i n g s t a t e m e n t s and f o r e c a s t s o f calamity. See T u r n e r , P . , ' W i t c h c r a f t as N e g a t i v e C h a r i s m a ' i n C u l t u r e , Disease a n d H e a l i n g D. L a n d y , ( e d . ) , M a c m i l l a n , New Y o r k , 1977:226-7. That  is  to  say,  'ought'  to  do.  an  imperative  which  states  in  absolute  terms  what  one  This i s E r i c h Fromm's t e r m i n o l o g y . See h i s Man f o r H i m s e l f . An Inquiry into the Psychology of Ethics Fawcett Premier Books, Holt Rinehart and W i n s t o n , New Y o r k , 1970.  30 11.  The o c c a s i o n seems t o be a s o u r c e o f t r u t h . See, f o r an e l e g a n t d i s c u s s i o n o f o c c a s i o n s and s o u r c e s o f t r u t h , B u r r i d g e , K., Someone, No  T. 12.  one P r i n c e t o n  A process D.E.,  13.  special  'Anthropology  No.  1,  The  effect  power,  of  University  March,  as  of I  Press,  interest of  in  Symbolic  Princetown,  medical Healing'  New J e r s e y ,  anthropology. Current  See  1979,  Chapter  Moerman,  Anthropology  Vol  20,  subtle  use  1979:59-80. deflecting  argue  in  attention  my c o n c l u d i n g  is  suggestive  chapter.  of  a very  of  CHAPTER  Acquiring  II  a Formal  Education  32  Introduct ion My  first  encounter  symptomatology  with  associated  the  with  medical  rationale  'inflammatory  used  bowel  to  account  disease'  was  for  some  the years  c  ago when I I  took  it  was for  satisfy  the  illness  such  were  of  recently, the  as  search  also  in  want  into I  in  effort  the  and  the  concerning  to  taken  provide I  w h i c h my r e s e a r c h  took  in  place  to  for  control  attempting of  the  control  keep  of  I had  provide  accumulated  undertake review  some  of  it  personnel  before  represents  those the  idea  type who  f r o m whom m a n y  of  and  was  character  serve  the  of  my  background  interviews  a major  interviews  been  context.  the  any  search  syndrome  results  of  a  This  how t h e  the  as  and  cultural  form,  and  patient  had  psychiatry  local  of  which  began  syndrome.  a  to  I  not  more  the  in  summary  Much  progress  patients in  the  what  determine  and b e c a u s e  and  domains  did  occurrence  accounts,  of  time,  forms  illnesses  disease.  discover  that  with  the  to  order  to  of  to  At  diagnosis As  ways  review,  from medical place  to  medical  look  to  a general  received  made  to  IBD w h i c h  my d e c i s i o n  class  an  to  want  that  course  and  the  to  whilst  attempt  by  a cure.  first-hand  communicated I  for  collecting  associated  literature,  had  the  was  hospital.  offered  looking  treatment  then began  which  information  began  literature  chapter,  sufferers  context  every  I  a military  relegated  during  this  information IBD  in  possible  me  in  patients  IBD was  that  in  explanations  as  interpreted  research  of  understanding,  took  In  the  dysfunction  epidemiology. was  that  cancer,  and b e f o r e  the  a paramedic  biophysical  medical  in  as  expectations  comfortable  made  granted  'managed',  severity  in  working  part  of  with the  formulated. of  community  my r e s p o n d e n t s  in  received  I  33 their  medical  care  believe  to  be  the  actions  of  local  and  dominant  in  the  them,  to  discuss  of  their  The  definitions  of  also the  designation separate  deal  for  which  colitis,  which  how t h a t  sufferers to  to  when  undertake  I  summarize guides  what  the  model  seemed  first  made  an e t h n o g r a p h y  I  clinical to  be  contact into  the  with nature  biomedical  in  IBD  the on  had  was  and  but  regional  medical  of  the  reference  was  in  point  or  follows  which  made  treatment  in  of  patients which to  be  'Crohn's of  in  my  was  sense  afforded  placed  affiliated  disease'.  are to  extended  a hospital  a  in  my  the a  with  There  colitis  me a s  in  of  was  ulcerative  here  medical  departure  commmon f o r m  thought  interpretations  therapeutic  and  condition,  enteritis,  IBD,  knew o f  hospital  often  What  I  The most  another  texts. of  IBD w h i c h  subject.  colitis':  in  of  encountered  understanding  actions  frame  the  category,  equivalence  disease  medical  I  'ulcerative  of  of  represent  diagnostic  ulcerative  this  IBD  interpretations  literature  'bowel-trouble'  Crohn's  of  want  model'  specialists,  my d e c i s i o n  established  experience  good  attitudes  I  suffering.  The m e d i c a l  review  Finally,  'explanatory  health-care  reflected and  attention.  is  and  excerpts rationale  setting:-  "The term " i d i o p a t h i c u l c e r a t i v e c o l i t i s " i s used to d e s c r i b e an i n f l a m m a t o r y c o n d i t i o n o f t h e c o l o n , charact e r i z e d by b l e e d i n g and u l c e r a t i o n , w h i c h i s not a t t r i b u t a b l e t o any s p e c i f i c o r g a n i s m . T h e d i s e a s e may p u r s u e an a c t i v e o r c h r o n i c c o u r s e T h e d i a g n o s i s i s made o n t h e h i s t o r y o f d i a r r h o e a w i t h p a s s a g e o f b l o o d and tenderness over the colon. Examination of the stools shows t h e p r e s e n c e o f pus and b l o o d b u t no E . h i s t o l y t i c a , and no s p e c i f i c d y s e n t e r i c o r g a n i s m s c a n be c u l t u r e d . E x a m i n a t i o n o f t h e r e c t u m e n d o s c o p i c a l l y may show v a r y i n g d e g r e e s o f i n f l a m m a t i o n , and u n l e s s t h e c o n d i t i o n is l i m i t e d t o t h e r e c t u m , a b a r i u m enema w i l l show c h a n g e s  a  of  34 in the colon. A l l grades of s e v e r i t y occur, from the m i l d e s t c a s e s o f p r o c t i t i s i n an a m b u l a n t p a t i e n t who p a s s e s one o r two l o o s e s t o o l s a d a y and o c c a s i o n a l b l o o d , to a c o n d i t i o n i n which the evacuation of watery, bloody s t o o l s o c c u r s t e n t o t w e n t y t i m e s d a i l y and w h i c h l e a d s to d e a t h w i t h i n a few weeks. T h e r e i s no s p e c i f i c treatment. I f the symptomatic measures discussed below are p r o v i d e d and m a i n t a i n e d , a p a r t i a l o r c o m p l e t e remission is l i k e l y in the majority of cases. T h e s e m e a s u r e s may have t o be c o n t i n u e d over l o n g p e r i o d s s i n c e the c o u r s e of the d i s e a s e extends over months or years r a t h e r than weeks. U l c e r a t i v e c o l i t i s i s a w a s t i n g d i s e a s e , and t h e maintenance of n u t r i t i o n is the chief consideration in treatment. W a t e r and e l e c t r o l y t e l o s s must be r e p l a c e d the  use  of  cortisones  such  as  prednisone  greatly  increases the chance of a r e m i s s i o n steroids should be g i v e n t o a l l p a t i e n t s s u f f e r i n g f r o m u l c e r a t i v e colitis a  state  of  euphoria  frequently  results  (from  the  administration of prednisone). The p s y c h o l o g i c a l s t a t e o f t h e p a t i e n t w i t h c h r o n i c u l c e r a t i v e c o l i t i s f r e q u e n t l y shows various abnormalities. Some p a t i e n t s a r e i r r i t a b l e and t r u c u l e n t , others are a p a t h e t i c , depressed or even s u i c i d a l ; many show an a b n o r m a l d e p e n d e n c e . This psychological state i s not s p e c i f i c to u l c e r a t i v e c o l i t i s . I t i s seen i n any p a t i e n t who h a s e x p e r i e n c e d c h r o n i c d i a r r h o e a f o r w e e k s o r m o n t h s f r o m w h a t e v e r c a u s e and who h a s l o s t 1 0 , 20 o r e v e n 30 p e r c e n t o f h i s b o d y w e i g h t . I t seems t h a t no o r d i n a r y human b e i n g c a n r e m a i n c a l m , c h e e r f u l and equable under the c o n d i t i o n s imposed by u l c e r a t i v e colitis, and t h i s s t a t e s h o u l d t h e r e f o r e be r e g a r d e d as a n o r m a l response to these conditions t h e most s t r i k i n g change i n the outlook of a s u f f e r e r w i t h u l c e r a t i v e c o l i t i s is seen a f t e r a s u c c e s s f u l colectomy surgical treatment has progressed. A n i l e o s t o m y b a g i s now a v a i l a b l e that can be s e c u r e l y s e a l e d t o t h e s k i n around the o p e n i n g , and h e n c e one o f t h e g r e a t o b j e c t i o n s t o t h e o p e r a t i o n o f ileostomy has been l a r g e l y overcome. I l e o s t o m y s h o u l d be combined w i t h t o t a l colectomy a p a t i e n t may b e considered s u i t a b l e for surgery because of the intractib i l i t y of the disease, that i s , because of repeated relapses d e s p i t e adequate treatment, or because of c e r t a i n c o m p l i c a t i o n s e . g . c o l o n i c or r e c t a l s t r i c t u r e or recto-vaginal fistula. Crohn's disease This term i s applied to a nons p e c i f i c , u s u a l l y c h r o n i c , inflammatory l e s i o n found in one o r more a r e a s i n t h e s m a l l o r l a r g e i n t e s t i n e . Typic a l l y the bowel i s t h i c k e n e d w i t h a narrow lumen w h i l e t h e m u c o s a l s u r f a c e shows v a r y i n g d e g r e e s o f u l c e r a t i o n . The m e s e n t e r y i s t h i c k e n e d and c o n t a i n s numbers o f enlarged lymph g l a n d s The f i r s t a t t a c k  t h e p a t i e n t may p r e s e n t i n is frequently misdiagnosed  various ways. as appendicitis  35 o r t h e n a r r o w e d l u m e n may p r o d u c e a n a t t a c k o f intestinal o b s t r u c t i o n , while i f u l c e r a t i o n is the predominant feature, t h e c a s e may be m i s t a k e n f o r one o f u l c e r a t i v e c o l i t i s T h e r e i s no known s p e c i f i c t r e a t m e n t . Corticosteroids have b e e n t r i e d i n t h e same d o s a g e s as f o r u l c e r a t i v e colitis a n d , t h o u g h o f t e n d i s a p p o i n t i n g , s u f f i c i e n t p a t i e n t s show a r e s p o n s e t o make one o f t h e s e d r u g s w o r t h a t r i a l It p o s s i b l e t h a t t h o s e c a s e s who p r e s e n t w i t h a p i c t u r e o f a c u t e i n f l a m m a t i o n , u l c e r a t i o n and b l e e d i n g r e s p o n d b e s t this therapy. Apart from e p i s o d i c pains, there i s often c o n s t a n t p a i n due to p e r i t o n i t i s . This w i l l require  is to  analgesics t h e s e m e a s u r e s may h a v e t o b e c o n t i n u e d for weeks as t h e d i s e a s e waxes and wanes I f the disease f a i l s t o s e t t l e , i f o b s t r u c t i v e a t t a c k s become more f r e q u e n t or i f t h e d i a g n o s i s i s i n d o u b t , s u r g e r y w i l l be i n d i c a t e d . The s u r g i c a l t r e a t m e n t o f the d i s e a s e c o n s i s t s e i t h e r o f r e s e c t i n g or s h o r t - c i r c u i t i n g the a f f e c t e d p o r t i o n of the gut. At f i r s t sight r e s e c t i o n promises a cure of the d i s e a s e but when p a t i e n t s a r e c a r e f u l l y f o l l o w e d up, it i s found that a v e r y h i g h p r o p o r t i o n have a r e c u r r e n c e of the c o n d i t i o n . A t o p e r a t i o n t h e s u r g e o n may b e f a c e d n o t w i t h a s i n g l e a f f e c t e d segment a l o n e but w i t h a s e r i e s of diseased areas with normal intervening bowel, which w i l l require e i t h e r a series of separated resections or a massive r e s e c t i o n of the bowel. Such o p e r a t i o n s c a n be f o l l o w e d by an i n t r a c t a b l e s t a t e of m a l a b s o r p t i o n . (Dunlop, e t . a l . , 1961: 532-539. 1 1  The  etiological In  with  an  problem:  attempt  a review  of  the  for  an e t i o l o g i c a l  the  causes  and d e b a t e that  of  thought  the  1940's  virus  as  directed  expand  going  to  agent  brought  speculation  a contributive to  the  was  this  What  colitis  almost  psychological  I  by  increased pathogen.  probability  that  was  a history  In In  the  the  sensitivity  concerning  some  role  some  I  of  began  that of  an  in  it  was  allergic  like  al  search  interest  in  research  suggested  ulcerative  a  of  a  theories,  colitis  factor.  fungus,  attention  colitis,  first  colitis,  1920's,  1930's to  the  Currently, ulcerative  model,  ulcerative  discovered  years.  responsible. about  with  underscores  sixty  pathogenesis?  biomedical  dealing  explanation.  back  be  upon  literature  ulcerative  a bacterial  was  to  physical,  has  Crohn's  or  In  some  been disease,  i  36 a manifestation about  1930,  concerning and  of  there the  that  and  unconvincing research  in  into  reaction,  a continuing  'psychological'  the  symptoms  terms  of  of  supplying  these  frame  of  attracting  areas  support  and  with  of  At  skepticism  in  to  the  same be  time,  it  genetic, been  the  largely  pathology,  a  a central  from researchers  genesis  Although  have of  since  debate  infectious,  origins  the  continued  factors  colitis  the  Also,  pathology.  ulcerative  continues. has  the  diet.  antagonistic  allergic,  evidence  reference  to  'emotional'  the  of  related  sometimes  and  into  aspects  or  and  associated  investigations  immunological  some  'psychosomatic' attention,  of  been  of  clinical  nutritional  auto-immune  has  role  persistence  seems  an  focus  in  of  various  countries. There aspects the  of  is  an e x t e n s i v e  ulcerative  argument  that  the  psycho-pathological (1955, often  1958, in  the  1968)  who  to  outbreak  far  the the  argument  found  most is  'impressive standing  pathology  is  and  of  Karush  common put  forward  psychopathology  in  of  in  defects,  the  mothers  development.  pioneer  of  this  Of  are  dependent his  these  with  relationships and  factors,  a the  (1930)  Engel most  approach  was  Murray  in  a  temporal  conflict  In Engel's  which  ulcerative  to  cited  marital  factors  patients  four  related,  related  of  and be  anxiety-state.  four  proponents  Murray  occur  that  few  of  to  and  psychosomatic  and  seems  was  and  by  1969)  patients  of  a  work  a patient's  his  quite  the  symptoms  there  are  precipitated  disturbances,  that  consistency'  of  psychological  there  recognized  onset  source  the  states,  (1968,  The  the  both  neurotic  emotional  personality  heterosexual  Although  and/or  that  on  colitis.  literature.  (1930)  literature  emerge  other  failure  to  dependency  was  by  work,  an  with  colitis:  with  sense,  longpeople,  achieve on  a  full  37 particular relationship,  and the extreme emotional r e a c t i o n s which occur when  t h i s dependency i s t h r e a t e n e d , i s the most important one. the f i r s t m a n i f e s t a t i o n o f the pathology, and  Both  i n subsequent  i n terms o f  e x a c e r b a t i o n s of  the c o n d i t i o n , the o c c u r r e n c e of the p h y s i c a l symptoms are, a c c o r d i n g to E n g e l , connected  to the p a t i e n t ' s f i x a t i o n on key  environment  in particular,  and,  figures i n their  social  to the a c t u a l , or t h r e a t e n e d l o s s or  s e p a r a t i o n from such r e l a t i o n s h i p s  (Engel 1955,  1958,  1968).  Psychological  a b n o r m a l i t i e s and d i s o r d e r s f a r beyond the range o f i n d i v i d u a l d i f f e r e n c e s i n the average his  p o p u l a t i o n were a l s o claimed to be  found by Wittkower (1938) i n  p a t i e n t s ' l i v e s b e f o r e the onset o f c o l i t i s , and,  p a t i e n t s he s t u d i e d , Wittkower argued  that t h e r e was  i n 28 of the 'a c l e a r - c u t  s e r i o u s enough to be regarded as a p r e c i p i t a t i n g agent.' the most e x t e n s i v e and r e c e n t years was his  i n v e s t i g a t i o n , Karush  by Karush  found  that  s c r u t i n i z e d were ' s c h i z o p h r e n i c ' , and paranoid' features. by Karush  patients'  14 of the 30 i n d i v i d u a l s who the b a l a n c e e x h i b i t e d  interpreted  In  were  'schizoid  and  by the l o s s of someone who  'symbolized  as both a p r e c i p i t a t i n g and c o n t i n u i n g f a c t o r i n  i l l n e s s careers.  In c l i n i c a l  e x p e r i e n c e , Karush's  findings  also followed  recommendation t h a t p s y c h o t h e r a p e u t i c e f f o r t s combined w i t h m e d i c a l i n patients' recovery.  Karush's care  In discussing therapeutic intervention,  however, Hertz and Rosenbaum o f f e r a caveat: they suggest p a t i e n t s o f t e n have no  of  i n more  and h i s a s s o c i a t e s (1968, 1969).  have been confirmed by H e r t z and Rosenbaum ( 1 9 7 7 ) , who  assist  One  emotional d i s t u r b a n c e i n such i n d i v i d u a l s , p e r c e i v e d  t o be u s u a l l y heightened  dependency', was his  The  trauma,  (1938:1358).  systematic studies of u l c e r a t i v e c o l i t i s  undertaken  40  t h a t because  i n n e r r e s o u r c e s f o r coping w i t h a c o n f r o n t a t i o n with  38 'unconscious  motives',  great  interpretive  therapy.  In  patient, profuse citing  even  if  intended  bleeding the  in  patients,  studied  over  an  received.  This  patients  who h a d  The  which shared  could by  all  etiological or,  at  research  out,  in  ranks  the  observers  the of  unquestionably state  is  view  studies  points  and  and  Researchers  it  upon  the  opinion  is  to  on  emotional  (and  surgeons)  causes  reviewers  for  who  for  to  in  the  episodes  (1977:256).  improvement  in  of  In  ulcerative  seen  in  patients  treatment  a control  the  group  discount  or  as  is  not  refusal or  etiology  a pathology  however, The  they  of  40  other  to  in  the  On t h e  form of an  whole,  for  psychiatrists, to  the  symptoms,  the  an  argument  pathology  are  not  of  to  yet  emotional  of  a  (1967)  division  pathology  whilst  the  factors,  Feldman  point  that  illness  interpretation  as  corresponds  disturbance,  role  a  conclusions  matter  the  with  accept  the  physical  a  refuted?  psychopathological  revealed  believe the  as  component,  subject.  practitioners:  a precondition  the  colitis  emotional  unproved,  of  directed  pathology  psychosomatic  emotional  of  of  treatment.  researchers.  reviews  use  precipitate  patients'.  the  the  psychotherapeutic  'psychosomatic',  as  medical  that  and  or  'can  improvement  such  based  connected  almost  no  the  ulcerative  and  division  gastroenterologists supported  to  in  remarks  psychological  interpretation:  considered  to  and  period  received  explanation  most,  helpless  attributed  with  of  careless  (1970)  psychological  be  be  somatic  year  interpretation  distinctively  constructive,  of  gastroenterological The  to  contrasted not  recommended  opinion,  O'Connor  eight  is  their  psychologically  concomitance  colitis  reservation  where most  cannot known. or  be  is  such  a  39 psychopathological several  grounds.  pathology  do  life-style  These  not  from  the  or  marked,  that  there  develop  ulcerative  advance  is  more  evaluation attitudinal physical  or  sociopathological associated  with  a large  (both  in  associates  (1970)  relating  living,  the  from be  and  the  work  that  general  that  of  also  be  psychiatric  of  translated  or or  the  attributes in  in  terms  people  that  precisely  psychois  psychoanalytical  do  and  how  transposed  precipitants  of  who  which  methodology  credit  or  the  studies  or  on  distinctively  traits  that  terms  to  not  argument  made  in  social  are  so  who h a v e  responses  established  c a n be  antecedents  study  colitis  and  that  the  in  Baltimore,  Crohn's the  disease)  which  re-location,  work  and  to  those  who w e r e  regarding  into  the  or  often  logically  intervention  etc.  living  were  at  as  general  population  control  interview  precedures  and  of  group.  social  his  aspects  are  home  the  with  stressful  not  and  background,  asked  patients  and  other  experiences,  ethnic  227  Mendeloff  with  individuals  history,  involving  frequency  reactions  Questions  the  cannot  the  unwillingness  scale  marital  representing  as  is  deficient  factors  the  do  treatment.  of  citizens.  acknowledges  it  patients'  experience,  adults  and  residential  experiences  healthy  are  of  personality  support  argument  terms  life-events  unique  which would The  declared  experiences  no  etiology  of  ulcerative  towards  fact,  a critique  Thus, IBD  stress  colitis  individuals  that  variables  form  that  population,  in  This  an a p p r o p r i a t e  assertions  ulcerative  general  psychological  symptoms.  of  in  psychogenic.  procedures  etiology  differences  colitis  a psychogenic  the  marked  exhibited are,  in  include  show any  emotionality  condition  factors  of  different  considered  birth  order,  IBD g r o u p  and o f  Although  survey  to  735  Mendeloff  approach  did  not  40 reveal the  'the  meaningfulness  criteria  sufficient stressful  regarding  evidence events  patients  with  from  healthy  the  divorce,  consumption. no  evidence  is  an  that  only  identifiable  done  14% o f  study  by G o l i g h e r  psychological employing  demonstrate ulcerative these with had also  is  the  took  work  standard  interviewed  considered into  al.  pattern  (1968) but  and  salient  length for  consideration  were  are  two  the  healthy  interviews  so  as  to  personality a wide  to  that  there  or  patients  that  the  with  was there  onset  or  out,  this  rather  superficial  well-controlled also of  which  those  The  variables,  of  to  well-known  involved.  of  patients  Each  65  type  patient and  was  variables  psychiatric including  terms  with  thirty-four  scoring  in  studies  free-association for  of  particular  failed  The most  between  course  points  have  ulcerative  a connection  of  data  of  drug  were  evaluation. of  and  200  (drawn  frequency  groups the  Norway,  group  origin  find  subjects.  yield  range  and  which  in  to  colitis.  personality  (1967)  control  the  concluded  able  other  methodology  al.  of  400  been  in  that  provided  exposed  a control  over  lives  employed  disorders  ulcerative  (1973:85)  in  with  concludes  study  psychosomatic  may h a v e  there  et.  psychiatric at  of  their  differences  Feldman  colitis  in  Shields  compared w i t h of  is  he  no more  large  terms  mental  involving  in  a  (1978:37-39)  interviewed  psychiatric  any marked colitis  colitis  As  assessment,  ulcerative two  et.  validated  Grunec  factors  symptoms.  for  were  were  In  in  subject',  which  compared  examined  in England,  emotional  physical  and  study,  those  the  sufferers  were  hospitalization this  to  citizenry.  colitis  behavioural  their  IBD  normal  ulcerative  research  colitis,  the  events  characteristics  that  population)  From  abnormal In  show  ulcerative  psychosis,  such  social  to  that  of  evaluation  cognition,  ego  41  s t r e n g t h s , d e f e n s i v e n e s s , dependence, e x t e r n a l problems, illness,  attitude  past h i s t o r y , a n x i e t y , d e p r e s s i o n , p a r e n t s , s i b l i n g  and  the responses were s c o r e d on the b a s i s o f a complex a n a l y t i c a l order to determine  towards so on,  formula i n  a d e s i g n a t i o n o f ' n o r m a l i t y or 'abnormality'.  l e n g t h o f time spent  The  average  i n the i n t e r v i e w i n g and c o n s u l t a t i v e p r o c e s s w i t h  p a t i e n t was  ten h o u r s .  essentially  'normal'  Twenty-nine o f the p a t i e n t s were regarded  and  f i v e as  'abnormal'.  The  and  each  as  f i v e abnormal p e r s o n a l i t y  types were a f f o r d e d d i a g n o s i s i n terms o f c h a r a c t e r d i s o r d e r s to a s i g n i f i c a n t degree schizoid  i n c l u d i n g d e s i g n a t i o n s such as b e i n g i n f a n t i l e , p a s s i v e ,  and dependent.  a l s o were thought  F o u r t e e n of those p a t i e n t s c l a s s i f i e d  t o be p e r s o n a l i t i e s w i t h  Feldman concluded  cases s t u d i e s d i d not c o n s i s t e n t l y show the presence o f  of  that  the  important  f a c t o r s of a p s y c h o l o g i c a l k i n d f o r the pathology, or any s i g n s  'extreme s t r e s s '  i n the case o f 3 3 o f the 3 4 p a t i e n t s i n the f i v e  p r e c e d i n g onset of the i l l n e s s , 'moderately  'normal'  passive-dependent,  p a s s i v e - a g g r e s s i v e , or anxious c h a r a c t e r i s t i c s .  precipitating  as  although i n 9 cases t h e r e was  years  a 'moderate' t o  s e v e r e ' degree o f s t r e s s present b e f o r e a r e l a p s e .  Further,  although t h e r e were 1 4 cases i n which the background o f the p a t i e n t ' s l i f e was  such as to suggest  be expressed  i n somatic  the  ' p o s s i b i l i t y o f emotional c o n f l i c t ' which  i l l n e s s ' , Feldman c o u l d f i n d no evidence  E n g e l ' s p r o p o s a l that u l c e r a t i v e c o l i t i s p a t i e n t s had a t t i t u d e s o f h e l p l e s s n e s s , except response  to the i l l n e s s  p a t i e n t s who  had  itself.  'might  to support  characteristic  i n the sense o f those a t t i t u d e s b e i n g a Feldman a l s o concluded  received extensive p s y c h i a t r i c  were t h a t although t h i s treatment has  that o f the  treatment,  the  seven  indications  aided the p a t i e n t s to a d j u s t to the  42 disease,  in  illness.  no  As  case  a result  questionable  whether  'psychosomatic' Reconciliation In  which  is  indeed cause  thought, argued  of  the  of  by  pathology.  there  and  is  Thus,  in  Feldman  colitis  Illness  question or  of  could  on  the  concluded properly  psychogenic, and  trauma,  but  that  Here,  there  is  by  course  that  it  of  the  is  be  thought  of  as  as  a pathology  a  reviewing  stressful  Engel's  (1973)  practitioners this  is  an  agreement  stress  stress  colitis  Shields  psychiatrists  considerable severe  is  ulcerative  observers  roughly  even more  effect  (1967:17)  most  emotional  appreciable  enquiry,  ulcerative  the  represented  surgery.  this  an  perspectives:  accepted  that  symptoms  of  had  psychosomatic,  suffer of  it  disease.  a review  considered  had  and  findings,  -  that  effect,  between  a  patients rather  the  with  two  with  dealing  the  Shields  be  thesis do  than  a  schools  gastroenterologists.  associated  associated  offers  to  with  experience  It  o i  the  of  writes:-  "No one s e r i o u s l y d e n i e s t h a t t h e r e a r e e m o t i o n a l problems i n the patient with severe u l c e r a t i v e colitis. These p a t i e n t s are o f t e n d e p r e s s e d , i r r i t a b l e , anxious and m o r o s e . B u t , i t c a n s u r e l y b e a r g u e d , who w o u l d not be i n t h i s s t a t e i f they passed t e n to fifteen b l o o d - s t a i n e d bowel motions a day - o f t e n accompanied by tenesmus - and c o u l d not v e n t u r e v e r y f a r f r o m t h e nearest lavatory? The symptoms o f t h i s d i s e a s e can wear down t h e most s t a l w a r t p a t i e n t and p r o d u c e in h i m e x t r e m e i n t r o v e r s i o n and a n x i e t y . These changes are s u r e l y the consequence of the disease r a t h e r than i t s cause" (1973:85).  When  the  symptoms  treatment, to  the  the  of  ulcerative  decision  'operative  to  colitis  resort  psychosis'  which  to  do  not  surgery  occurs  at  is  respond made.  this  time,  to  chemotherapeutic  Several and  of  writers the  refe  43 appropriateness pre-  and  Shields  post-  operative  associates  (1970)  studied,  schizophrenic,  the  colectomy,  However, effects  it of  It  accepted  role  psychiatric  reconcile  was made of  possibilities of  skills  For  52% h a d  intervention  themselves  to  the  be  case  Also,  to  all  to  the  to  the  of  the  of  factors  some w r i t e r s  were  that  the  in  helping  surgery.  in  As  or  at  some  time,  this  category  seemed  his  the  immediately  of  dealing  (Shields  as  and  of  afterwards.  the  traumatic  diarrhoea to  time  to  deal  exhibit  psychoses.  in  crises  I  treatment,  the  physician. according to  read, with  be  1973:89)  to  part  however, the  accompanying  to  thought  diagnosed  symptoms  even  varied  he  the  which  and  which  psychotic'  after  reports  team approach  psychotherapy  been  operation  their  emotional  surgeon  patients  'grossly  without  patients  regard  in  the  of  also  became  before  psychotherapists,  psychopathological picture.  just  with  a group  patients  subside.  clear  in  in which  appeared  improvement  assigned  that  post-operative  pre-emptive  combined  and  latter  surgery  intervention  found  either  also  any more,  general  be  patients  or  " I n t h e m a j o r i t y o f p a t i e n t s ( w i t h whom m e d i c a l treatment has f a i l e d ) t h e most s u c c e s s f u l p r o c e d u r e is p a n p r o c t o c o l e c t o m y : t h e d i s e a s e i s t o t a l l y e x c i s e d and i t s d e b i l i t a t i n g e f f e c t s removed. This radical operation r e q u i r e s t h e f o r m a t i o n o f an i l e o s t o m y and i t w o u l d n o t be s u r p r i s i n g i f s u c h a f u n d a m e n t a l a l t e r a t i o n i n t h e body image and t h e h a b i t s o f a l i f e t i m e ( s i c ) ( c f . re. e x c r e t i o n ? ) d i d not induce emotional problems thereafter" (1973:87).  O'Connor  with  psychotherapeutic  argues,  v  their  of  which  of  surgery, must  psychiatry  should  involve the  degree the  the  universally  Clearly, the  that  to  not  the  therapeutic which  etiological  'has  not  yet  44 established others the  its  (Hertz  colitis, bring  about  Crohn's  the  fact  the  that  these  changes  that  inflammation  and b l e e d i n g .  since  it In  are  is  the that  is  the  It  is  (or  afforded which  also  as  a  of  take  from  occur  in  solely  by  a Dr.  comprehensive  I  find  as  review  (Janowitz into  the  autoimmunity,  c a n be  for  of  lacks  the  in  most  ulcerative  the  capacity  to  1977:46).  have  not  identified.  in  parts the  to  be  of  and  yielded In  an  tissue  body.  a disease entity  1976) likely  immune  any  been  a  reasons include the  is  and  rare  however, with  unknown  has  is  it  fever  origin  and  established  1932.  research  most  of  in  colitis  It  sometimes  in  of  ulcerative  the  it  These  associated  Sachar  cellular  the  as  be  several  Clinically,  the  three  in  of  are  label.  of  to  insofar  colon.  a disease Crohn  considered  there  terms  occurring  to  is  colitis,  bowel,  disease,  described  agent  even  diagnostic  other  considered  most  the  those  first  infection,  But  ileitis)  place  it  transmissible  a responsibility  (Weiner  ulcerative  of  namely  for  has  intervention  separate  a diarrheal  investigations  whilst  1  interpretation  regional  history'  could  schedule ,  issue?  category  s t i l l  patient.  symptoms  inflammation  pathogenesis,  etiologic  physical  treatment  psychiatrist  form of  restricted as  the  psychosomatic  different can  the  natural  was  disease that  is  in  physician's  disease  the  observed  'medical  the  changes  wall  no  the  medical  disease  that  usually  to  Crohn's  intestinal  is  1977)  separate  involving  why C r o h n ' s  present  family  of  a  general  condition  the  a cure  disease:  same  be  psychotherapeutic  Although the  of  adherent  the  to  and Rosenbaum  management  sympathetic  right  undertaken the  general  avenues  deficiency  persuasive  'afterword'  to  Crohn's  conclusion  of and  evidence this  into  that  an  extensively-  45 referenced Crohn's  article,  disease,  the  authors  particularly  with  the  symptomatology  during  its  recognition  a diagnostic  cause  and  cure  of  is  that  conclusion of  an e n t i r e l y  epidemic, failure the many  as  of  at  centuries  what  least  patients  with  before  they  were  colitis,  attention  reported  by  either  between  disturbance  and  or  Hertz  life  form  and  colitis  or  as  as  Crohn's  terms  of  the  high  crises  prior  to  the  onset  the  evolution  as  of  the  existed  with for  treated. disease  has  pathology.  a comparative  incidence of  the  themselves  Crohn's  disease  the  devastating  a psychosomatic  (1977:253)  in  a  of  since  find  and  which  successfully  to  Insofar  console  diseases  that  question,  development  IBD known  Rosenbaum  failed  of  discussion  fact  envisaged.  leprosy,  of  the  first  authors  and  any  precipitating  has  the  explained the  be  character of  have  the  the  interpretation  ulcerative them  and  to  is  well  concerned,  and on  efforts  authority  syphilis  an absence  regard  might  mysterious  century  witnessed  eminent  of  to  all  With  which  is  the  respect  entity,  being  research  differences  al.  one  history  afforded as  is  on  nineteenth  pathology.  ulcerative  However,  the  new d i s e a s e ,  comparative  been  the  medical  Unlike not  as  reflect  revealed  study  of  no  emotional  illness  (McKegney  et.  1970). At  this  biological  stage  and  of  my r e s e a r c h ,  psychological  assessments  establishing  an  pathogenesis  was  compounded by  perspectives  and  framework  A wider So  intelligible  context: far,  I  the  had  of  promise  looked  in  with  and/or my  of  seemed IBD  convincing  frustration  reference of  what  of  in  to  hand,  answer with  these  be  to  the  an o v e r v i e w the  problem  the  question  apparently  of of of  limited  interpretations.  epidemiology  vain  for  information  which  would  locate  the  the  46 history where  of  it  incidence  might  response  to  changing data  this  IBD  question.  industrialized Western  reported of  Crohn's  the  of  in  10,000  of  the  person  in  18,000.  studies both  have  example,  IBD  is  more is  in  often  found  incidence example,  a  as  of  could  of  is  onset  occurring  in  fourto  be in  of  USA  six-fold  as  Jews,  Indians  the  case  there  is  and  contrast,  of  the on of  the  family basis  Jewish  among y o u n g  people,  with  between  ages  ten  of  Crohn's  and  of  in  and  the  some entities,  in  disease,  their  all  The  for  studies,  for  desease  among  lower in  incidence the  indicate  that  descendants  syndrome  cases  twenty-five.  one  research  than  also  case  random d i s t r i b u t i o n .  families. 60% o f  in  predilection  Spanish Americans  same  syndrome  person  Crohn's  reports  in  years,  one  a much  to  modern  disease  American  for  a  are  employed,  Most  proclivity  and by  of  a higher  others.  as  recent  least  in  and,  two  in  at  are  answer  societies  there  the  increases  in  as  century,  of  colitis  the  appears  Although  Epidemiological  case  the  20th  context,  some  exclusively  also  patterns  in  to  expected the  It  of  a partial  identified  years.  and  respect,  promise  'ethnicity'  than  a whole.  be  dramatic  the  groups  to  socio-cultural  manifestation  this  the  ulcerative  a  occurring  also  50  affected  that  In  within  last  in  the  prevalent.  suggests  i n members  true  as  condition  is  the  American  than might  particularly  a  frequency  case  referred  population  IBD  seemed  epidemiological  some  people,  often  as  When m e a s u r e s  shown  sub-populations  general  the  concluded  have  among b l a c k  the  population  pathologies  syndrome  which  within  incidence  that  understood  science  increasing  between  suggesting  the  appears  disease,  pattern  on  societies,  differences  be  of  human c i r c u m s t a n c e s .  medical  with  susceptibility  conceivably  epidemiological  which  and  of  has  This a  Crohn's,  Despite  and  the  peak for fact  47  that  the s o c i o l o g i c a l  i n d i c e s which are employed i n the  epidemiological  r e s e a r c h which I encountered are c l e a r l y o v e r - g e n e r a l i z e d unsophisticated variability factors.  rather  i n t h e i r terms of r e f e r e n c e , t h e r e d i d appear to be  i n s u s c e p t i b i l i t y which was  The  and  best  that c o u l d be  not  s a i d was  explained  through  genetic  that t h e r e d i d seem grounds to  suggest that membership i n c e r t a i n s o c i o - c u l t u r a l c a t e g o r i e s , and, extension, had  adherence to p a r t i c u l a r s t y l e s of l i f e ,  a critical  r o l e to p l a y i n the d i s e a s e  by  modes of b e l i e f or a c t i o n ,  process.^  With t h i s e p i d e m i o l o g i c a l i n f o r m a t i o n , which seemed, as w i t h my f i n d i n g s i n the l i t e r a t u r e to r a i s e even more q u e s t i o n s the nature  o f the syndrome, the g e n e r a l  efforts  than answers as  at e x p l a n a t i o n  t r i p a r t i t e c h a r a c t e r , w i t h r e f e r e n c e to i s s u e s e x i s t i n g at the p s y c h o l o g i c a l and  sociocultural  d i s p u t e or ambiguity surrounding explanatory for  level.  But  at each l e v e l ,  p o t e n t i a l or a range of v a r i a b l e s .  or Crohn's d i s e a s e : how  these d e s i g n a t e d  or why  I t was  c a t e g o r i e s of IBD:  s t r e s s played  the two were not  major r e f e r e n c e p o i n t s , mind and  outstanding  and  acted upon, and how  world  not  now,  was  of everyday l i f e .  how  either  altogether  body, and  a r o l e i n e i t h e r of to be treatment,  or the other  the e p i d e m i o l o g i c a l  model at a l l . The  of  issues  q u e s t i o n which  t h i s p o t - p o u r r i of r e p r e s e n t a t i o n s was  many of them were cogent, i n the much more In the next c h a p t e r ,  clear,  for either u l c e r a t i v e  In terms of d i a g n o s i s and  i n t o the e x p l a n a t o r y  was  biological,  t h e r e was  d i f f e r e n c e appeared i n the importance g i v e n to one  incorporated  assumed a  or what s i g n i f i c a n c e there was  found i n the p a t t e r n of s u s c e p t i b i l i t y . a critical  to  the c r i t e r i a of i d e n t i f i c a t i o n , cogency or  example, when symptomatology i n d i c a t e d a d i a g n o s i s  colitis  other  I review the i s s u e of  assembled concrete  48 methodology a g a i n s t a background of a n t h r o p o l o g i c a l assumptions and the l o c a l context  i n which I was  to meet some p o t e n t i a l  informants.  49 F O O T N O T E S TO C H A P T E R  1.  II  I n the U n i t e d S t a t e s , where e t h n i c d i f f e r e n c e s were emphasized, the following studies are r e l e v a n t : Acheson, E.D., 'The d i s t r i b u t i o n o f u l c e r a t i v e c o l i t i s and r e g i o n a l e n t e r i t i s i n United States veterans with p a r t i c u l a r reference to the J e w i s h r e l i g i o n ' , Gut 1 : 2 9 1 - 9 3 1 9 6 0 . Cufley, G.A., Gregory, D.H., Danemann, H . , and Law, D . H . , ' C r o h n ' s d i s e a s e , 1 9 6 1 - 1 9 7 1 : an e p i d e m i o l o g i c s t u d y i n A l b u q u e r q u e , New M e x i c o ' , A m . J . D i g . D i s 17:954-55, 1972. M e n d e l o f f , A . I . , and Dunn, J . P . A m e r i c a n P u b l i c H e a l t h A s s o c . V i t a l and H e a l t h S t a t . M o n o g r a p h , D i g e s t i v e D i s e a s e s . Harvard U n i v e r s i t y P r e s s , 1971: M o n k , M . , M e n d e l o f f , A . I . , S i e g e l , C . I . , and Lilienfeld, A., 'An e p i d e m i o l o g i c a l study of u l c e r a t i v e c o l i t i s and r e g i o n a l e n t e r i t i s among a d u l t s i n B a l t i m o r e . I . H o s p i t a l i n c i d e n c e and p r e v a l e n c e , 1 9 6 0 - 6 3 . ' G a s t r o e n t e r o l o g y 53:198-210. 1967: Rappaport, H., B u r g o y n e , F . H . , and S m e t a n a , H . F . 'The pathology of r e g i o n a l enteritis' Mil. Surg. 109:463-502, 1951: Rogers, B.H.G., Clark, L.M., Kirsner, J.B., ' T h e e p i d e m i o l o g i c and d e m o g r a p h i c c h a r a c t e r i s t i c s o f inflammatory bowel d i s e a s e : an a n a l y s i s o f a c o m p u t e r i z e d f i l e o f 1400 p a t i e n t s ' . Journal Chron. D i s . 24:743-73, 1971. In Europe, where demographic f a c t o r s a r e p e r t i n e n t : - (Sweden) N o r l e n , B . J . , K r a u s e , U . , and Bergman, L., 'An E p i d e m i o l o g i c a l study of Crohn's disease" Scand. J . Gastroenterol 5:385-90, 1970: Krause, U., ' E p i d e m i o l o g y i n Sweden' i n R e g i o n a l E n t e r i t i s (Crohn's Disease) Skandia Int. Symp. S t o c k h o l m : N o r d d i s k a Bokhandelans 1971:142-151. (Norway) Myren, J . et. a l . 'Epidemiology of r e g i o n a l e n t e r i t i s i n N o r t h E a s t S c o t l a n d ' , B r . J . Surg 52:215-17, 1965. (England) E v a n s , J . G . , and A c h e s o n , E . D . , 'An e p i d e m i o l o g i c a l study of u l c e r a t i v e c o l i t i s and r e g i o n a l e n t e r i t i s i n t h e O x f o r d a r e a ' Gut 6:311-324, 1965. My e n q u i r i e s i n t o t h e q u e s t i o n o f e p i d e m i o l o g i c a l s u r v e y s i n B r i t i s h C o l u m b i a r e s u l t e d i n t h e r a t h e r g e n e r a l d i s c o v e r y t h a t t h e r e h a s b e e n an i n c r e a s e o f a p p r o x i m a t e l y 50% i n t h e n u m b e r o f p e r s o n s h o s p i t a l i z e d in t h e p r o v i n c e w i t h c h r o n i c e n t e r i t i s and u l c e r a t i v e c o l i t i s o v e r t h e period 1970-1977, the l a s t year for which f i g u r e s are a v a i l a b l e . There i s a p r e p o n d e r a n c e o f f e m a l e c a s e s a n d t h e r a t i o o f women i s increasing, w i t h 1 9 7 7 f i g u r e s s h o w i n g 62% f e m a l e v s . 38% m a l e p a t i e n t s . The l a r g e s t s i n g l e c a t e g o r y o f p a t i e n t s a r e f e m a l e , aged 25-44 y e a r s . See t a b l e o f data, D i v i s i o n of V i t a l S t a t i s t i c s , M i n i s t r y of H e a l t h , Province of B r i t i s h Columbia. (Appendix i i i )  50  CHAPTER I I I  Establishing  a Methodology and F i n d i n g Informants  51  Introduct ion I do not wish to pretend that my enough not i n my  was  comprehensive  to have o v e r l o o k e d some i n t e r p r e t a t i o n s which might have r e s u l t e d  research  taking  i n v e s t i g a t i o n of the of the  l i b r a r y research  sufferance  a d i f f e r e n t course. l i t e r a t u r e gave me  But  was  the overwhelming sense that  of the commitment, by  of t h i s p a r t i c u l a r k i n d of s i c k n e s s ,  my  observers  to models of  i n t e r p r e t a t i o n based upon imposed s t r u c t u r e s of meaning.  The  abstractive  nature of the concepts employed, whether i n the domains o f b i o m e d i c i n e , p s y c h i a t r y or epidemiology seemed to have l i t t l e Moving through the  properties defined  social  affiliation.  i n the r e g u l a r i t i e s observed?  the  'typical'  s u f f e r e r has  dependent or somewhat p s y c h o p a t h i c and  But  The  grotesque, i t was,  to sum  the  a weak p h y s i c a l c o n s t i t u t i o n , i s  i s p r o b a b l y Jewish or  nevertheless,  Protestant.  that even i f t h i s  p o i n t i n g to some r e g u l a r i t i e s  i n the phenomena which the o b s e r v e r s e v i d e n t l y p e r c e i v e d What seemed at f a u l t , was  how  as  data.  the employment of c e r t a i n d i s c r i m i n a t o r y  axioms, which, because of a p a r t i c u l a r p r e o c c u p a t i o n  w i t h the  object-subject  r e l a t i o n s h i p , tended to c e l e b r a t e elements i n the o b s e r v e r ' s view of world which were exact positivist  appropriate  to s c i e n t i f i c d i s c o u r s e  c r i t e r i a of experimental v e r i f i c a t i o n and  I am u n d e r s c o r i n g exception  and  the use  in  c a r i c a t u r e which  Rather d e s p a i r i n g l y , I began to come to the c o n c l u s i o n c a r i c a t u r e was  reality.  l e v e l s of evidence, these a b s t r a c t i v e concepts d e a l  t u r n w i t h the body, the mind and  emerges i s that  c l a i m to phenomenal  of a p r i o r i  and met  replicability.  t y p i f i c a t i o n s , which, w i t h the  of some of the p s y c h o a n a l y t i c a l  the the  And  here  possible  accounts, were p e c u l i a r l y bounded  52 and r e s t r i c t e d  i n scope.  Above a l l , these t y p i f i c a t i o n s were l i m i t e d both i n  terms of the absence o f any e l a b o r a t i o n o f the p r o c e s s e s by which they occurred.  N e i t h e r were they l i n k e d t o o t h e r aspects which would enmesh them  i n nature or  culture.  For example, even though the o b s e r v a t i o n a l f i e l d d e a l i n g w i t h metabolism, substantially real,  of biomedicine, in  i n v o l v e s s p e c i a l i z e d knowledge o f phenomena which i s  as compared w i t h the o f t e n e t h e r e a l nature of c u l t u r a l  p r o d u c t s , the s e l e c t i v i t y  i n the p e r c e p t i o n o f what c o n s t i t u t e s the  i s s u b j e c t to these same g e n e r a l p o i n t s of c r i t i c i s m . the model o f the pathology r e s t r i c t e d manifested  interdependency  some t r u n c a t e d form,  system?  and  t y p i f i c a t i o n s do not l i n k i n d i v i d u a l  i n t e r a c t i o n a l m i l i e u i n which i t i s generated,  critical  investigation,  emotional s t a t e .  Nor  something, white  does  thought  nor  arrived  at some  i s t h e r e , i n t h i s g e n e r a l area of  any c l e a r c r i t e r i o n as to the standard o f n o r m a l i t y from which  the i n d i v i d u a l can be c o n s i d e r e d d e v i a n t i n p r e c i s e ways. epidemiology,  Why  a sense o f the  p a r t i c u l a r l y t o the r e f l e x i v e process by which the i n d i v i d u a l supposedly  no  of the process o f b o d i l y f u n c t i o n i n g ?  S i m i l a r l y , the p s y c h i a t r i c the s o c i a l  for instance, i s  to m a l f u n c t i o n i n g v i s c e r a , w i t h  s u g g e s t i o n o f l i n k a g e s t o the autonomic nervous  the model not c a p t u r e , i n at l e a s t  to  Why,  pathology  the o b j e c t i v e s o c i a l s t a t u s t y p i f i c a t i o n s  but not enough about  Again, i n  seem t o be t e l l i n g  b e i n g Jewish or P r o t e s t a n t , young and  us  female,  and o f European o r i g i n s , to a l l o w us to see what s o c i a l p r o c e s s e s or  sets o f v a l u e s and All  a c t i o n s are a s s o c i a t e d with  susceptibility.  these c o n s t r u c t s t h e r e f o r e seemed to be based  assumptions.  But,  on r a t h e r narrow t a c i t  from the a n t h r o p o l o g i c a l s t a n d p o i n t , what was  mostly  n o t i c e a b l e by  i t s absence was  whole i n d i v i d u a l was provocative  the e n c u l t u r a t e d  silent.  My  first  data I c o u l d  or o t h e r , was  f i n d which would r e f i n e the s o c i a l augment that data w i t h  experience,  p a t h o l o g i c a l or o t h e r w i s e ,  membership. had  But,  as at l e a s t one  people c a r e f u l l y  about was  might be  associated with  and W o l f f  occurred,, or were r e p o r t e d . i n c i d e n c e of i l l n e s s had situation.  life  situation,  on how  education,  life  research  i n some of  fish.  the  In s t u d y i n g  3,000  They concluded  to be  h a l f the  that o n l y one illnesses  that the c r i t i c a l  the i n d i v i d u a l ' s own  t h i s might be  quarter  that  f a c t o r i n the  i n t e r p r e t a t i o n of h i s / h e r  In c o n s i d e r i n g an approach to the study and how  and  income, m a r i t a l s t a t u s  (1958) d i s c o v e r e d  i n d i v i d u a l s i n each group experienced  life  that  famous p i e c e of e p i d e m i o l o g i c a l  unable to c a t c h the r i g h t  of an i n d i v i d u a l ' s  s y s t e m a t i c a l l y undertaken, I  events or h a b i t s might be connected to s u s c e p t i b i l i t y ,  speculated i n terms  of such v a r i a b l e s as p s y c h o l o g i c a l s t r e s s , or d i e t , or other e c o l o g i c a l factors.^ to  j t h e r e f o r e reviewed the methods which seemed to be  determine the  of one  l i k e l y sources  i n vogue  of s t r e s s i n an i n d i v i d u a l ' s l i f e .  common approach to the problem of uncovering  the sources  Typical  of such  s t r e s s i s the q u e s t i o n n a i r e method, the most well-known of which i s the ' S o c i a l Readjustment R a t i n g  by  as to what forms of  i n f i v e r e l a t i v e l y homogenous groups over twenty y e a r s ,  ethnic o r i g i n , Hinkle  of the  review of whatever  some p r o j e c t e d n o t i o n s  t a k i n g i n t o account such f a c t o r s as age, and  the  i d e n t i t y of s u f f e r e r s and,  demonstrated, even a f i n e r mesh than that employed  r e s e a r c h I read  v o i c e of that  r e l a t e d to membership on some  to undertake a s y s t e m a t i c  conjecture,  The  i n c l i n a t i o n , prompted by  n o t i o n t h a t s u s c e p t i b i l i t y was  s o c i a l category  individual.  S c a l e ' , ^ which c o n s i s t s of  forty-two  54 l i f e - e v e n t s , most of them unpleasant and 'stressful'.  relief,  be  of t h i s shopping l i s t  stressful  or a r e l e a s e  Now  f o r the  population  living  of d i s e a s e later.^  approach, p o i n t i n g to the  person, e.g.  and  same t h i n g , namely the and  retirement,  ' r e l a t i o n of a d i s e a s e  sometimes be  r e l a t e d to methodology and  constrained  the other  s i t u a t i o n , overlooks  of s o c i a l  the  There are p e r s o n a l i n the  towards themselves and appropriate  to my  general all.  two  or  an i n d i v i d u a l views meaning  they should  r u b r i c s which guide t h i s d e t e r m i n i n g  accounts which i n d i v i d u a l s g i v e  towards o t h e r s .  idea  and  spontaneously to c o n s c i o u s n e s s i n  The  as to how  be  process, they act  methodology which began to appear  task of t r y i n g to c l a r i f y what v u l n e r a b i l i t y might c o n s i s t  o f , then, i s r a t h e r r a d i c a l perhaps when c o n s i d e r e d conventional  often  assumption  importance of p e r s o n a l  d e t e r m i n i n g the s i g n i f i c a n c e which events have, or of how  which are r e v e a l e d  are  process to a  by  latter  i n e s t a b l i s h i n g how  e x p e r i e n c e which an i n d i v i d u a l b r i n g s  defined.  a  to the e s t a b l i s h e d  I s h a l l r e t u r n to d e a l w i t h the  i n d i c a t o r s as a p r i o r i  life  that  i n f a c t be  the m e d i c a l a n t h r o p o l o g i s t  A methodology which p o s i t s c e r t a i n k i n d s  psychological  may  fact  working i n a n a t u r a l environment',^ i t would appear  in culture.  or her  be  f o r someone e l s e .  i n some ways, epidemiology can  assumptions, one  his  f o r one  although the e p i d e m i o l o g i s t  searching  that,  authors to  In h i s work on the s o c i a l causes of i l l n e s s , Totman (1979) i s  highly c r i t i c a l what may  b e l i e v e d by the  examining procedures, but  anthropological  t r a d i t i o n and  alongside  i t i s p a r t of the w e l l therefore  i s not  some established  really radical  at  55 Theory a d v i s e s methodology Over the y e a r s ,  an i n t e r e s t  has been developed and expression how  i n the  individual  as the  l o c u s of c u l t u r e  expanded upon i n a n t h r o p o l o g i c a l e n q u i r y  and has  i n a number o f r e l a t e d t h e o r e t i c a l o r i e n t a t i o n s i n the study  consciousness,  knowledge and  each o t h e r .  Running through these  and  social.  an a t t a c k on the t r a d i t i o n a l e m p i r i c i s t p o s i t i o n and  the i d e a that d a t a about the world  imprints  The  i t s e l f on the p a s s i v e  second thread  of  these  i n t e r p r e t i v e work  from s o c i a l  or  i n t e r e s t s and v a l u e s .  symbolic  c h a r a c t e r of s o c i a l r e p r e s e n t a t i o n s : a t t e n t i o n i s drawn to the ways  e t c . ) can become r e i f i e d , social  the  (e.g. r o l e s , k i n s h i p t y p o l o g i e s , s o c i a l  i . e . things-in-themselves  classes  as r e f e r e n c e p o i n t s i n  communication.^  Attempting  to understand the s i g n i f i c a n c e and meaning which  i n d i v i d u a l attached anthropology.  individual's  to l i f e  railed  i s a well-established interest in  elegantly against  those who  i n t e r p r e t a t i o n of c u l t u r a l experience  c o n f i g u r a t i o n s of ideas and or of  experience  the  Perhaps the most famous e a r l y advocate of t h i s approach  Edward S a p i r , who  life,  i s the emphasis p l a c e d on  notion  cultural  i n which such r e p r e s e n t a t i o n s  third  which  subject:  i s a c r i t i q u e of the  t h a t s c i e n t i f i c knowledge i s knowledge somehow d i v o r c e d The  first  to  i n v o l v e s r e j e c t i o n of  knowledge o f o b j e c t s , i t i s a s s e r t e d , always i n v o l v e s the The  and  t h e o r i e s are three common threads  have a b e a r i n g on knowledge, both s c i e n t i f i c  of an a c t i v e c o n s c i o u s n e s s .  of  a c t i o n as a t t r i b u t e s of the human s u b j e c t  combine to produce the ways i n which i n i d i v i d u a l s r e l a t e to the world  is  found  would d i s c o u n t  i n favour of  was  the  abstracted  a c t i o n s as an a p p r o p r i a t e d e s c r i p t i o n of a way  'culture' writ large.  In arguing  f o r the v a l u e of ethnography  of  56 into  the  'more  intimate  'configurations priorties  and  of  structure'  evaluations,  potentialities  themselves,  Sapir  caricatures  of  finds  the  culture,  objectified.'  (Sapir  well-known  not  and  culture,  inclusive  of  and  realization'  remedy  often  1961:  of  for  201,  so w e l l - k n o w n  202)  exclusive which  what  envisaged  represented  he  as  implications,  considers  are,  anthropologists  the  individuals  'complete,  There  in  of  to  be  tight, course  who h a v e  construct  for  simple  impersonal other  taken  and  equally  a  similar  position.^ What  I  thought  self-adjudicative values  and  sense  what  has  been  puts  it,  to  worry  be  of  prime  process  of  my  of  identity.  called  collect  about  how  generalized events  to  which  resolution)  they of  make  their  whether  they  adjudged  the  tends as  out  to  the  (Idler  way  in  unquestioned) point  I  informants  accept  made  I  wanted  not  the  which  The  viewed  believed treatment  1979;  Good  medical  concerning  but  sense  find the  of  out  how  origin  cogent  had  react  of  they  As  1977),  and,  and  brings  research,  in  which  to  (1983) and  more with  was  to  offered  several  (and  their  (or  by  into  focus  the  solution  dealt  been  research  a given  This  concepts  had  of  informants  my e n q u i r y  received.  established  categorizations.  b y my  in  Geertz  progress  not  as  to  epidemiological  and  of  as  informants  or  Landy  discover  kind  ready,  those  component  be  explanation  was  to  structure  any  offered  explanation to  was  inherent  anticipating  other  they  1977;  individuals  diagnostic  it  some  concepts  to  the  importance  circle,  to  linked  illness.  sickness,  pointed  was  hermeneutic  themselves  how  they  I  anthropological  later.  determine  how  informants  'experience-near'  to  terms  the  research  on  for  the  implication, writers  have  illness  often  the  sick  role  largely  me b a c k  to  sometimes  the tends  other to  57 take the d i s e a s e e n t i t y f o r granted  i n r e s e a r c h d e s i g n and  fact  culturally relative construct.  t h a t i t i s an h i s t o r i c a l l y  Furthermore,  and  t h e r e are v a r i a t i o n s i n treatment  to be  which emphasize one  aspect of a p a r t i c u l a r pathology  why  t o see how  i t i s important  c u l t u r a l context.  And  to  be an extremely  found w i t h i n a c u l t u r e , over another, which i s  symptomatology i s d e f i n e d i n a p a r t i c u l a r  i t i s the meaning which treatment  which a n t h r o p o l o g i s t s and  sociologists  important  to n e g l e c t the  has  involved i n i l l n e s s  i s s u e ( H a l l and Stacey  1978;  f o r the p a t i e n t  research consider Kleinman 1980).  I d e c i d e d t h e r e f o r e to i n t e r v i e w p r o s p e c t i v e informants w i t h open-ended q u e s t i o n s of a g e n e r a l type, which would p r o v i d e me s u f f e r i n g , where both the events  in their  l i v e s which they a s s o c i a t e d w i t h  symptoms, the c o n s t r u c t i o n put upon those events the d i a g n o s i s and  treatment  a f t e r I had begun my methodological  would be  and  forthcoming.  important  and  In a work which  appeared the  approach to s u f f e r i n g and develops what he r e f e r s to as a  the  'natural history of d i s e a s e . 1  to e l i c i t  process, but  the i n t e r p r e t a t i o n of  r e s e a r c h , Kleinman (1980) d e a l s at l e n g t h w i t h  framework to d i s c o v e r 'explanatory models' of the illness'  w i t h a c a s e - h i s t o r y of  such models from  ' n a t u r a l h i s t o r y of  I n h i s r e s e a r c h , he  a l l those engaged i n the  finds i t  clinical  the p a t i e n t ' s model i s c e n t r a l to h i s a n a l y s i s . ?  Terms o f the i n t e r v i e w c o n t r a c t Before any to  read.  The  o u t l i n e d my  i n t e r v i e w s began, I prepared  f i r s t was  purposes  a letter  documents f o r my  to a p r o s p e c t i v e informant,  i n undertaking  e x p e r i e n c e s of b e i n g i l l .  two  informants  i n which I  a research project concerning  I e x p l a i n e d t h a t the o b j e c t i v e s o f my  people's research  were to f i n d out, and make g e n e r a l i z a t i o n s about the ways i n which  58 i n d i v i d u a l s r e a c t t o the d i s c o v e r y t h a t they have an i n t e s t i n a l d i s e a s e , how they thought  about the d i s e a s e as compared w i t h other k i n d s o f d i s e a s e s , what  they c o n s i d e r e d to be s i g n i f i c a n t of themselves as a r e s u l t .  i n having  informant,  i t and how they took  care  I a l s o s a i d t h a t I wanted to make g e n e r a l i z a t i o n s  about the ways i n which o t h e r people informant had such  caused  r e a c t ( e d ) to the knowledge that the  a d i s e a s e and the ways i n which those people  as he/she endeavoured t o cope w i t h being  ill.  t r e a t e d the  I p o i n t e d out that  my study d i d not i n v o l v e q u e s t i o n n a i r e s , that my prime i n t e r e s t was to f i n d out, as completely  as p o s s i b l e , what the informant's  interpretations of  s i c k n e s s episodes were, and what b e i n g s i c k meant as a p e r s o n a l I a l s o promised i n t h i s  l e t t e r that i l l u s t r a t i o n s of personal  experience.  experiences  which were v o l u n t e e r e d would be a f f o r d e d anonymity and c o n f i d e n t i a l i t y . IBD  informants My access  and  i n a l o c a l context: l o c a l influences t o informants  a neighbour,  began as a r e s u l t o f t a l k i n g to an IBD p a t i e n t  who gave me the name o f an o r g a n i z a t i o n which had been  recommended to h e r by h e r d o c t o r , as a l i k e l y source o f h e l p and a d v i c e f o r her i n f i n d i n g out more about the pathology  and a l s o the chance to meet o t h e r  people who s u f f e r e d from the same, or a s i m i l a r c o n d i t i o n to h e r s .  This  o r g a n i z a t i o n , comprised  i s known  mostly  o f IBD p a t i e n t s and t h e i r r e l a t i v e s ,  as the North Western S o c i e t y o f I n t e s t i n a l Research ( S I R ) . informants,  Most o f my  as i t happened, were s u b s c r i b e r s to the monthly n e w s l e t t e r o f  t h i s o r g a n i z a t i o n and c o n t a c t e d me i n response  to a briefly-worded notice  which I was a b l e to p l a c e i n t h i s p u b l i c a t i o n .  The n o t i c e simply s t a t e d  t h a t , as an a n t h r o p o l o g i s t , I wished t o i n t e r v i e w people w i t h bowel d i s e a s e .  As I found  inflammatory  out e v e n t u a l l y , d u r i n g the course o f my  interviews, supporter either  only  and  At  organization  my  informants  member,  ambivalence  the  time,  might  be  understanding general  of  a regular  expressed  purposes.  the  one  of  sense  of  the  the  of  health-care  opinions direct  or  are  were  they  pathology  which  have  to  were  being  me  in  my  not  in  I  want  to  bowel also who  make  either  informants  terms  of  gained  my m e t h o d o l o g i c a l  and  brief  local  to  and  the  views  about  as  to  the  rather the  of  information,  personal  These  but  world  to  SIR  assessments  social  their  illustrate  reference  understanding,  authoritative the  and  organization.  making  this  informants'  defined  spoke  the  informants'  in  to  a  interviewed  influential  here  want  with  advanced  my  was  in  certain  of  I  as  organization's  disease  with  organization  how  digress  so much my  the  established  But  I  this  informants  understanding  affiliated  express  in which  influenced  not  other  interest  specialists  some way  they  seemed  communication they  in  in  the  literature.  important,  connection  because  SIR  had  active  the  of  inflammatory  in  membership  I  illness.  how  all  lack  shaping  communicated opinions  or  however,  in  their  and  was  and  approach  to  because  my  informants. The  SIR  organization  a man and w i f e previously. was  to  by  the  The  newsletters  for and  advisor  gastroenterologist  of  formed had  the  information  a diagnosis  medical  daughter  purpose  disseminate  received regular  whose  was  died  of  about  attached  to  the  as  or  booklet.  Anderson,  largest  through  disease  a voluntary  particularly  colitis  a Dr.  largely  from C r o h n ' s  IBD  information SIR,  1976,  organization,  ulcerative an  in  Crohn's This who was  general  to  the  two  association,  patients  who  had  through  literature  was  edited  prominent  hospital  of  years  disease,  a  efforts  in  the  region.  60 Some  of  the  also  used  into  the  to  fund  raised  through  for  be  of  fatal.  a more  booklet,  in  disease origin  the role  cause  appraisal.  factors  Instead,  largely these  the  factors  research  IBD,  or  pathogens  together.  study,  found  was  infer  of from  explanations  if  no  noted of  IBD  evidence  psychosomatic  to  to  Dr.  IBD,  a viewpoint  the  patients support  he  (SIR  IBD  the  first, can  antipathy had  of in  no  one  sure  people  in  knows what  with  newsletters  to  exclusively  with  the  conjunction  with  a  a precis  and  possible  dealing of  proposition  advanced  role  conditions  for  all  research  to  written,  'psychosomatic'  say  Also,  some  patient's  the  'that  not  Newsletter  in  he had  IBD b e i n g  in  their  explanation  from t h i s  populations  only was  from  could,  which  almost  IBD  distinct  which  that  of  an  concerning  one  observed  link  and  was  Anderson,  chemistry  two  pathologies.  that  Anderson's  of  no  upon d e a l t  by Dr.  precipitating  secondly,  the  origin.  this  debate  volunteers  obtained  missing  grounds:  abnormalities  also  circumstances  only  develop  SIR  them  booklet,  that,  two  I to  important  and  attempts  psychosocial  SIR  therefore  reported  with I  (and)  from  etiology,  probability on  play',  problems  the  as  the  blood  reference  extended  discounted,  diseases,  of  the  the  Anderson,  noted  emotional  diagnosis  colitis  I  or  and b i o c h e m i c a l  which  me t o  by  directed  taken  unknown  to  emotional  anatomical  of  reference  was  SIR members,  included  made  also  in  samples  From Dr.  He r e f e r r e d  psychological  similar  traits  blood  conditions,  process.  of  research,  any  psychological the  contributions  inherited  IBD which  detailed  was  of  relatives.  physiopathological cases,  of  comparing  and o t h e r  and d e s c r i p t i o n  through  a programme  possibility  patients, parents  monies  No.  the that 10  with  the  Norwegian ulcerative  1979:3)  I  could  psychopathological in  our  first  conversation.  Through S  ,  a  members  a colleague  senior  on  the  relationship S  the  have  versus  between  of  was  able  to  Dr.  there  S no  functioning fields the  I  or  his  a  of  on  some  of  which  himself  as  a  was past  of  causes  be  victims. in  attended  Yet  by  acquaintance  some of  explain  aberrant  he  why  in  this  that,  virology  of  these  this  that  that  would  SIR  his  experience,  IBD was or  provide  his  discussion  caused  by  cognitive  continuing  (but  and w i t h  the  who h a s  whom I  that  research eventual  in key  also  gastroenterological SIR members,  a  short route  circumstances practising  operations,  in which  after  had  performed  a productive  psychosocial  surgeon,  Crohn  despite  diseases.  with  the  with  psychiatrist  in  perceptual  expected  or  Dr.  true  an e x t e n d e d  probability  that  coping  In  another  radical  in  material.  or  in  and  SIR  Dr.  i n knowing  literature,  the  to  'gastroenterological'  hold  argument  Dr.  the  disease,  face,  of  not  possibility  found  to  on  the  informants) the  lectures Crohn's  a  lectures  in  affiliated  my  might  specialist  lecture  reaction  not  to  adamant  in  and  with  gave  pathologies  argument  Rather,  absolutely  IBD  the  contact  who  his  have  did  a loss  disorders  the  colitis  clearly  at  believe  surgeon,  of  life-situations and  offered  In  typification  published  patients.  dismissed  understanding  the  to  IBD.  mysterious The  was  t h e n made  patients  psychogenic  auto-immune  surgery  interview  I  emotional  A prominent  area,  was  understanding  radical  the  grounds  in of  and  of  which  these  I  same h o s p i t a l ,  ulcerative  surgery.  much o f  ,  were  of  the  explanations  opinion,  psychological  to  radical  with  at  problems  victims  discount  familiarity with  the  Anderson,  aspects  stress,  'psychiatric'  encapsulated  the  psychological  become  effects  Dr.  psychiatrist  emphasized  they  of  he  whom t h e  in  to  the  or the  gave  a  introduced disease  had  been  62  named.  H i s l e c t u r e dealt e n t i r e l y with  developed  the novel  s u r g i c a l techniques  being  t o e x c i s e p o r t i o n s o f the bowel and w i t h new forms o f  hyperalimentation.  I n a d i s c u s s i o n w i t h t h i s surgeon a f t e r h i s l e c t u r e , I  asked him whether he thought there was any m e r i t  i n seeking  e x p l a n a t i o n s based on a p a t i e n t ' s l i f e - s t y l e or emotional  etiological  attitudes. His  response was t h a t he d i d not b e l i e v e that t h i s would be v e r y p r o d u c t i v e , and that  i n fact  i f he was to know or be a p p r i s e d o f the p e r s o n a l  l i f e - d e t a i l s of  h i s p a t i e n t s , o r t o get to know them v e r y w e l l , he doubted t h a t he would be able t o perform  r a d i c a l s u r g e r y upon them at a l l .  From some g e n e r a l p r a c t i t i o n e r s I encountered, and w i t h whom I d i s c u s s e d my r e s e a r c h i n v e r y broad my e v e n t u a l  terms, t h e r e was c o n s i d e r a b l e eagerness t o hear o f  f i n d i n g concerning  these p r a c t i t i o n e r s  said  the i l l n e s s c a r e e r s o f IBD i n f o r m a n t s .  that they suspected  t h a t some p a t t e r n o f a t t i t u d e s  might be common to IBD p a t i e n t s and that those of the e t i o l o g i c a l  this.  IBD  observations  initial  At SIR meetings, I attempted t o assess arrived  a t t i t u d e s c o u l d w e l l be p a r t  framework, but that they had never had the time or the  o p p o r t u n i t y to c o n f i r m sufferers:  A l l of  the ways i n which i n d i v i d u a l s had  at a d e c i s i o n t o become members o f the o r g a n i z a t i o n and how  with IBD i n t e r p r e t e d the r e l a t i o n s h i p between the m e d i c a l s t a t u s as s u f f e r e r s .  Most o f my respondents,  SIR because i t was an important  source  They viewed themselves as the b e a r e r s be e x p l a i n e d by m e d i c a l  l e c t u r e s and t h e i r  i n these b r i e f  t o l d me that they had been recommended by t h e i r d o c t o r s  those  conversations,  to get i n touch  with  o f i n f o r m a t i o n and companionship. o f an a f f l i c t i o n which as y e t c o u l d not  s c i e n c e , which was a f f e c t i n g  an e v e r - i n c r e a s i n g  63 number  of  people  should  be  commanding  medical  research  general  opinion  time, of  that  died  British a  and of  as  of  least  a result  of  considered  attitude  the  peers  and  to  coping  the  with  superficial  world  daily  these of  not  concerning  the  which  showed  the  the  one  that did  of  of  not  all  in  doing  friend, so  far  from  the  private  I  whom I  best  could  their  fact by  in of  it  they  or  their  was at  a result  from  and  All who  general  their  their  social  and  diarrhoea of  that  these  ill-health of  the  relative,  life  any way  for  could.  ascertain, of  which  funding  spoke  that  mode  attacks  as  and  circumstances, with  them  functioning  a whole,  and  the  as  about  as  acquaintance  respects,  brought  body  these  sufferers  distinguish  apart  Canada  government  were  Also, in  in  Under  person,  routine  they  fact  that  there  appeared  to  conceivably concerning  meet  knowledge  as  to  in  with  fate no (or  part  their  the  some  had  cases  escape.  the  illness  they  this  I  also  the  or  in  having  symptoms.  but  cruel made  trick aware  of  over  that It  was  other  one m i g h t as  if  the  have  a  plight,  I  offered  with  the  stoicism with  an a c c e p t a n c e their  the  issues  only  associated  as on  their was  prognosis  appeared  me w i t h  'gastroenterological')  paramountcy  discourse  illness,  stoicism  was  understood I  their  of  provided  renditions  uncertain  some k i n d  But  have  way  of  the  specifically  or of  the  sufferers  sophisticated  about  played  more  IBD  explanation  talking  In  subsume, be  to  biomedical  was  biomedical  occasions  only  explanation.  which  group  IBD.  changes  kind  impressed  this  and  'ostomates'.  Although  was  share  surgeons  contemporaries,  adjustments  become  small and  individuals to  larger  the  at  Columbia  investigation.  physicians  them knew  had  in  lives,  degree  to  of  from which  explanation which  with  might  someone  'gastroenterological'  64 meaning of t h e i r  i l l n e s s exhausted the  i n t e r p r e t i v e p o t e n t i a l of  their  imagination. My  experiences  of having  read  the l i t e r a t u r e  i d e a of the ways i n which the pathology was a u t h o r i t i e s and  of meeting i n d i v i d u a l s who  to l e g i t i m a t e my  matter what might be  the  treatment or p e r s o n a l  the v e r y  represented  l e a s t was  l i f e - e x p e r i e n c e s , that  in local  to be  some c o n f i d e n c e  t r y my  by me  not  should  I t was  be  conducted  no  concerning  i n death.  me  had  salving efforts  a view they might express i n  ascertained. their  Whatever c o n s t r u c t i o n they l i v e s would have to  i n no p o s i t i o n to m a n i f e s t l y to make.  told.^  I  would be made a v a i l a b l e to  A l s o , that  in private.9  affect  I t seemed a p p r o p r i a t e  to i n d i c a t e , even i n a metacommunicative way, being  c l e a r , that  view of themselves i n which they  Whether t h i s was  likely  and  inflammatory bowel  the t h e r a p e u t i c or at l e a s t  i n s o f a r as I was  t h i n k about what I was possible,  informants  t h e i r i l l n e s s and  as they would be best  experiences  members o f t h i s a s s o c i a t i o n whom I  would have to be  would wish to p l a c e on  choices  The  regarding  expended on t h e i r b e h a l f .  accepted  these  at worst c o u l d r e s u l t  appeared to have a b i o m e d i c a l  another c o n t e x t ,  But  a l l seemed  s o c i a l communication as a c o n d i t i o n which at  f e a r e d , and  from the membership of SIR.  had  informants  i n d i s c u s s i o n s about b e l i e f s  expected, c o r r e c t l y , that most of my  already met  might be my  i n t e r v i e w i n g technique.  forthcoming  an  l o c a l prominent medical  sense of the need f o r c e r t a i n e x t r a p r e c a u t i o n s  s t r a t e g i e s connected w i t h  d i s e a s e was  seen by  c h o i c e of method of i n v e s t i g a t i o n .  a l s o sharpened my  illness,  that I d i d , of o b t a i n i n g  be such  therefore,  what I might  i n t e r v i e w s , where  to  65 I had  solicted  approval from Dr. Anderson, i n h i s c a p a c i t y as  s u p e r v i s i n g e d i t o r of the membership n e w s l e t t e r , to i n c l u d e the i n v i t a t i o n the p a t i e n t r e a d e r s h i p to v o l u n t e e r as i n f o r m a n t s , advertisement  I mentioned above.  w i t h twenty-three  The  responses  of the t w e n t y - f i v e informants  i n t e r v i e w , most of whose experiences  i n the form of  the  I r e c e i v e d were to p r o v i d e I was  are recounted  to  to e v e n t u a l l y  i n this thesis.1^  me  66 FOOTNOTES TO CHAPTER I I I  1.  Among other f a c t o r s , t h e n o t i o n o f d i s t i n c t i v e d i f f e r e n c e s i n d i e t a r y h a b i t s between modern and more t r a d i t i o n a l c u l t u r e s . I n d i s c u s s i n g noni n f e c t i v e d i s e a s e s o f t h e bowel, f o r example, which seem p e c u l i a r t o modern c u l t u r e , B u r k i t t suggests that t h e absence o f f i b e r i n modern d i e t i s a l i k e l y common c a u s a t i v e f a c t o r . B u r k i t t , D.P., 'Some d i s e a s e s c h a r a c t e r i s t i c o f modern Western c i v i l i z a t i o n ' Logan, M.H., and Hunt, E.E., ( e d s . ) , 'Health and the Human C o n d i t i o n : P e r s p e c t i v e s on M e d i c a l Anthropology' Wadsworth P u b l i s h i n g company, Belmont, C a l i f . 1978:  137-147.  *~  2.  See, Holmes, T.H. and Rahe, R.H., 'The s o c i a l readjustment r a t i n g s c a l e ' J o u r n a l o f Psychosomatic Research 11 1967:213-118.  3.  T h i s d e f i n i t i o n i s a t t r i b u t e d t o Scrimshaw, N.S. e t . a l . ' I n t e r a c t i o n s o f N u t r i t i o n and I n f e c t i o n ' WHO, Geneva, 1968, by P f i f f e r l i n g , i n h i s review of the c o n n e c t i o n s between epidemiology and anthropology. See P f i f f e r l i n g , J-H., 'Some i s s u e s i n t h e c o n s i d e r a t i o n o f non-Western and Western f o l k p r a c t i c e s as e p i d e m i o l o g i c d a t a ' S o c i a l Science and M e d i c i n e  9, 1975:655-658.  =  4.  I also discuss t h i s question Footnote #8, chapter 1.  i n terms o f s o c i o l o g i c a l r e s e a r c h  i n my  5.  T h i s i s a p e r s p e c t i v e drawn from many s o u r c e s . With r e f e r e n c e t o t r a d i t i o n a l e m p i r i c i s m : - from Kant's understanding o f the nature of knowledge and h i s theory o f forms, i n which the argument i s made t h a t such forms cannot be d e r i v e d from the o b j e c t s o f experience - the understanding o f o b j e c t s always i n v o l v e s t h e i m p o s i t i o n o f a p r i o r i i d e a s . ( C r i t i q u e o f Pure Reason). A l s o from phenomenology and G e s t a l t psychology. I n anthropology, see C a s s i r e r , E . , The P h i l o s o p h y o f Symbolic Forms 3 v o l s . New Haven: Y a l e U n i v e r s i t y P r e s s 1965. For a view o f the r e l a t i v i s t i c view o f s c i e n c e , see Max Weber, 'Science as a V o c a t i o n ' i n From Max Weber, H.H. Gerth and C. Wright M i l l s , OUP, New York 1958:129-156. For debate on the t e m p o r a l l y s p e c i f i c c h a r a c t e r o f s c i e n c e and c o n n e c t i o n s t o g e n e r a l s o c i a l knowledge, see Thomas Kuhn, The S t r u c t u r e o f S c i e n t i f i c R e v o l u t i o n s : Chicago, U n i v e r s i t y o f Chicago P r e s s , 1962, and the ensuing debate c a r r i e d i n I . Lakatos and A. Musgrave (eds.) C r i t i c i s m and t h e Growth o f Knowledge Cambridge: Cambridge U n i v e r s i t y P r e s s 1970. F o r an a t t a c k on p o s i t i v i s m , see P e t e r Winch, The Idea o f a S o c i a l Science R.F. H o l l a n d ( e d . ) , London: Routledge and Kegan P a u l , 1963. F o r the r e i f i c a t i o n / o b j e c t i f i c a t i o n t h e s i s , see P e t e r L. Berger and Thomas Luckmann, The S o c i a l C o n s t r u c t i o n o f R e a l i t y , New York: Doubleday Anchor, 1966. I t c o u l d be argued that Durkheim's mandate to 'consider s o c i a l f a c t s as t h i n g s ' might be amended t o read, 'consider how the s o c i a l a c t o r c o n s i d e r s s o c i a l f a c t s as t h i n g s . '  67 For example, Kluckhohn, C., ' T h e o r e t i c a l bases f o r an e m p i r i c a l method of s t u d y i n g t h e a c q u i s i t i o n o f c u l t u r e by i n d i v i d u a l s ' Man 8 8 - 8 9 , J u l y , 1 9 3 9 : 9 8 - 1 0 3 , and the t r a d i t i o n o f p s y c h o l o g i c a l anthropology, which would i n c l u d e such names as Margaret Mead, John Honigmann, Anthony W a l l a c e , E r i k E r i k s o n , Gregory Bateson, John W h i t i n g , R i c h a r d P r e s t o n , L o u i s e S p i n d l e r and many more. Kleinman p o i n t s out how u s e f u l i t i s t o be a p r a c t i s i n g p h y s i c i a n , which g i v e s him a f a i r l y ready access t o d o c t o r / p a t i e n t i n t e r a c t i v e c o n t e x t s . As I e x p l a i n c o n c e r n i n g one i n t e r v i e w with t h i s i s not always s u s t a i n a b l e .  a chronically i l l  young man,  When p r i v a c y was i n t r u d e d upon, i t had some r e g r e t t a b l e consequences. In one i n t e r v i e w , which I do not use i n t h i s d i s s e r t a t i o n , a young man had been t e l l i n g me at some length how h i s i l l n e s s began at a time when he was extremely angry with t h e ways i n which h i s new b r i d e ' s f a t h e r was d e a l i n g both w i t h him and h i s w i f e . H i s w i f e , meanwhile, who had agreed to s t a y i n another room i n the apartment, caught some o f h e r husband's d i s c o u r s e and, coming i n t o the room where the i n t e r v i e w was t a k i n g p l a c e , i n s i s t e d that what she had heard from h e r husband 'confirmed h e r s u s p i c i o n ' that h i s i l l n e s s had been p r e c i p i t a t e d by f a m i l y arguments. She c h a l l e n g e d me d i r e c t l y t o c o n f i r m h e r o p i n i o n . I suggested that her i d e a might w e l l have some m e r i t . The c o u p l e began an argument and I l e f t , without completing the i n t e r v i e w . On another o c c a s i o n , i n an i n t e r v i e w which I r e p o r t on, an e l d e r l y woman whom I thought I would be i n t e r v i e w i n g i n p r i v a t e , was found t o be s h a r i n g a s m a l l apartment w i t h a man o f whom she was c l e a r l y a f r a i d . As she whispered t o me as I was l e a v i n g , " I would have so much more t o t e l l you, i f we were alone", even though t h e man i n t h e next room d i d not seem t o be a c t i v e l y l i s t e n i n g t o our c o n v e r s a t i o n . (See " D o r i s " ) . The informants t o whom I r e f e r d i r e c t l y , o r who account f o r themselves i n the n a r r a t i v e s I p r e s e n t , are, o f course i d e n t i f i a b l e as persons i n what they have t o say about themselves. As a k i n d o f c h e c k l i s t , however, what f o l l o w s here i s a g e n e r a l a p p r a i s a l o f c e r t a i n a r b i t r a r y s o c i a l c h a r a c t e r i s t i c s , which might be o f i n t e r e s t from a more c o n v e n t i o n a l s o c i o l o g i c a l or e p i d e m i o l o g i c a l standpoint. There were n i n e t e e n women and s i x men i n the t o t a l i n t e r v i e w e d p o p u l a t i o n . The women ranged i n age from twenty-two t o s i x t y - f i v e . Twelve o f the women were c u r r e n t l y m a r r i e d , f o u r were unmarried, t h r e e e i t h e r separated o r widowed. Two o f the men were m a r r i e d , four were e i t h e r s i n g l e o r separated. The average age o f t h e women was 3 5 . The average age o f the men was 3 2 . I n terms o f r e l i g i o u s a f f i l i a t i o n , twenty-one o f t h e informants had P r o t e s t a n t backgrounds, two were C a t h o l i c and two were J e w i s h . The age at which i l l n e s s was diagnosed ranged from 15 t o 4 0 ; the most common age at which d i a g n o s i s was e s t a b l i s h e d was 2 3 . I n terms o f f a m i l y background: E n g l i s h (3) English-Canadian ( 5 ) German-Canadian ( 5 ) I r i s h ( 1 ) Scots ( 1 )  68 S c o t t i s h - C a n a d i a n (2) I r i s h - C a n a d i a n (4) Dutch-Canadian (2) Norwegian-Canadian (1) R u s s i a n - C a n a d i a n ( 1 ) . In very rough terms, the c l a s s b a c k g r o u n d o f my i n f o r m a n t s w a s g e n e r a l l y b l u e - c o l l a r ( w i t h t w o e x c e p t i o n s , f a r m e r - l a n d o w n e r s a n d b u s i n e s s p r o p r i e t o r s h i p s ) w h i l s t my i n f o r m a n t s t h e m s e l v e s c o u l d be c o n s i d e r e d l o w e r - m i d d l e t o m i d d l e c l a s s and a l l w h i t e - c o l l a r w o r k e r s . E i g h t o f my i n f o r m a n t s h a d r e c e i v e d university-level education. M o s t were v e r y l i t e r a t e , and e v i d e n c e d a much b r o a d e r g e n e r a l k n o w l e d g e t h a n t h a t a t t r i b u t e d t o t h e i r parents.  69  CHAPTER  Making  Anthropological  IV  Sense  of  a Crucial  Account  70 A In  fieldwork setting  most  intention out  often  and  the  first  o n my r e s e a r c h ,  uppermost  in  it  interview  was  my m i n d .  He  a quote  from Anthony  Wallace  which  was  said,  " . . . w h i l e t h e a n t h r o p o l o g i s t may o r may n o t u n d e r t a k e t h e s o l u t i o n o f p r o b l e m s o f d i f f e r e n t i a l d i a g n o s i s and e t i o l o g y ( w h i c h , a s we o b s e r v e d e a r l i e r , u n a v o i d a b l y involve q u e s t i o n s o f b i o l o g i c a l as w e l l as p s y c h o l o g i c a l dynamics) he c a n c e r t a i n l y i n v e s t i g a t e t h e p a t i e n t ' s and t h e c o m m u n i t y ' s t h e o r i e s o f i l l n e s s and i t s t r e a t m e n t . Thus h i s most i m m e d i a t e l y r e l e v a n t c o n t r i b u t i o n c a n b e an a n a l y s i s o f how, i n the s o c i e t y i n q u e s t i o n , symptomatology a n d i t s p r o g r a m m i n g a r e n o r m a l l y c o n c e p t u a l i z e d . A s we h a v e i n d i c a t e d a b o v e , w h a t e v e r i t s e t i o l o g y , t h e c o u r s e o f an i l l n e s s o c c u r s i n a s o c i a l m a t r i x and i s o b s e r v e d b o t h by t h e v i c t i m and a s s o c i a t e s . T h e i r c o n c e p t i o n o f what i s h a p p e n i n g w i l l p l a y an i m p o r t a n t p a r t i n d e t e r m i n i n g what w i l l be t h e i r response t o t h e i r symptoms. Thus even i f e t i o l o g y and t h e p r i m a r y symptoms o f an i l l n e s s w e r e . . . t o b e c o n s i d e r e d as p h y s i o l o g i c a l a c c i d e n t s and t h u s as l a r g e l y i n d e p e n d e n t of c u l t u r e , t h e e f f o r t s o f t h e v i c t i m and o f h i s f e l l o w s t o c o p e w i t h t h e i l l n e s s must be r e c o g n i z e d as b e i n g h i g h l y d e p e n d e n t on c u l t u r e , f o r t h e s e responses t o i l l n e s s are v e r y c o n s i d e r a b l y d e t e r m i n e d b y w h a t may b e c a l l e d t h e n a t i v e and, i n p a r t i c u l a r , the p a t i e n t ' s theory of i l l n e s s . In s h o r t , s i n c e the cause of i l l n e s s , even i f physiologically i n i t i a t e d , i s p r o g r e s s i v e l y m o d i f i e d by feedback v i a the v i c t i m ' s and t h e c o m m u n i t y ' s c o n c e p t i o n o f t h e i l l n e s s , the v i c t i m ' s p e r s o n a l i t y and t h e c o m m u n i t y ' s c u l t u r e p l a y a determining role". (1972:384-5).  I n my v e r y made  the  what  she was  mistake  informant pleasant herself tasks  first of  in  demeanour, in  which  not  telling  paused  her she  interview, providing  me, her  largely  was the  was  obviously  highly  rather  My  and,  I  felt  with it  interviewee  from  the  competent  enjoyed,  nervous  informant  because  discourse.  gregarious,  house,  I  which  ways  and w e l l  was  to  and  self-conscious  enough  time  to  to  speak  necessary was in  a mature which  she  organized  provide  in  and  expand  woman,  when  on my  with  comported meeting  a comfortable  and  the  a  71 and  aesthetically  very her  deeply home,  books,  for  she  which  interesting the  range  was  an  her  she  and v a r i e t y of  question  concerning  into in  SIR  my  of  In told in  response  me t h a t  report signs  of  the  that,  from  mysterious  brought her told  to  be  she  might  lead  provide I  and  in  recipe range  of  remarked  and  told  me t h a t  she  to  save  the  from u n i v e r s i t y  and  she  to  efforts  In  response to  any  to  the  my  kind  obliged  some w a y  of  to  and  that  felt  cared  introduction  a wide  responded  believed  obviously  noticed  she m a r r i e d .  supported  my  graduated  she had  she  of  committed had  She  collection  bookcase,  much  before  that  to  family.  the  and why  my q u e s t i o n  she had  months  which  for  in  part  and h e r  effort  her  me t h a t  said  it  her  and v e r y  told  should if  As  family.  to  to  upon  my  advertisement of  be  research  a  participant  establishment  of  a  causation.  recent  had  disease  investigation,  theory  books  illness  she  children.  for  qualifications her  her  in  meals  the  She  newletter,  Crohn's  her  history  environment. technical  the  of  for  modern k i t c h e n  helped  nutritious  reader  environment  school-age  me h e r  said  acquired  in  two  showed  and  avid  natural  attractive  she had had  she had  seen  disease  being  a medical origin,  some  time  about  by  mother-in-law me t h a t  suffered  the  felt  was  very  she  had  few  her  disease  assured  She  told  prepared  'fantastic'.  She had  relationship  somehow c o n n e c t e d  symptoms  b e g a n when h e r  to  of  for  and that  was  for come  her  from  there that  to  to  of  believe  lengthy  mother-in-law  no  longer  to  knew  again,  that her  she  any  a disease  her  sickness came  that  radiologist's  as  strike  she  but  although  she had had w i t h her  a  were  thought  it  illness,  some y e a r s ,  that  me a l s o  condition  she was  difficult  history  symptoms  been  present.  that  the  from Crohn's  standpoint,  and  the  regarding  of  she  stress husband  and  episode. live  in  the  She  72 area,  and  that  they  mother-in-law's for  some  time  constant But  her  began  feel  regimen.  She  for,  had been the  condition  to  view  her  her  defence  her  in  fact, she  the  chemotherapy as  My  that  a result  of  his me  of  this  not  taking  appraisal  of  his  'authoritarian'  difficult  for  understood  what  changes  to  her  changes  she  had  In  the  notes  'here who of  is  from  that  told  health made  a great  domestic  living  in  she  him  which in  which  an e x t r o v e r t ,  places her  she  any  deal  world,  her I  made  believed  for  myself  importance  a comfortable  had  the not  the  said  time  she  prescription Instead,  other  tablets  her  improved had  she  down  doubled  the  radiological informed  this  she  chemotherapeutic  fact  because  she  would  her was  only  specialist sure  make  he would  life-situation been  At  them.  much w h e t h e r  had  in  after and  on her  obviously  home  of  in  for  brought  and  her  life have  the  about  from  productive  by  the  relationships.  intelligent  and who  and  insisted  support  the  attributed  that  her  the  which  the  had  her  daughter-in-law.  her  without  medication,  very  a  a new  thrown  had  she  attitude  social  o f f  prescribed  that  as  to  entreaties  attitude.  tablets  and had  concerning  highly of  the  doubted  she  dogmatic  assessment  told  role  deferring  husband  mother's  and g i v e n  'better  he had  his  stop  Her  prescribed  specialist  was  and  take  was  her  informant  her  had  supplements,  said  of  husband's  specialist  that  vitamin  directly  she  his  She  information. that  of  with  to  attention. to  deal  did,  and  decided  concede  to  never  had  she  come  her  she  time  that  had  better,  taking  when  her  because  believing  toilet.  dosage  to  for  that,  attention,  to  called  after  needed  abated  demands  neighbours  she h a d  had  this  interview,  compassionate role  derives  as a  a middle-class  deal  suburb.  wrote,  person,  a mother  good  I  and of  as  a  woman manager  satisfaction  Clearly  her  73  i l l n e s s was  a l e a r n i n g p r o c e s s , and what she  l e a r n e d was  t h a t her body  responded p o s i t i v e l y to her change i n a t t i t u d e towards her husband mother-in-law. concerning  She  i s t e l l i n g me  t h a t she developed  expected  some h y p o t h e s i s  the r e s o l u t i o n of some c o n f l i c t , which c l e a r l y had  e f f e c t on her, between the b e h a v i o u r a l and of her  genuinely  felt  behaviour  was  i n her r o l e as a w i f e and sense of her  inauthentic.  convince h e r s e l f and  and  an  emotional  a f f e c t u a l o r i e n t a t i o n which  was  some s o r t of need to a s s e r t a more  s i t u a t i o n , t h a t t o l d her t h a t the p r e s c r i b e d In t h i s p r o c e s s , she  o t h e r s , t h a t t h e r e was  no  appears to have had  ' n a t u r a l ' or  to  'instinctively-  d i r e c t e d ' c o n n e c t i o n which should be made between her r o l e as w i f e and mother and  the s o c i a l performances she was  have found of  this  support  argument.  transcend  and  supposed to be f o l l o w i n g .  She  encouragement from o t h e r s to l e g i t i m a t e her  It i s clearly  the a u t h o r i t y c o n t a i n e d  a q u e s t i o n of her  f a m i l y group.  refutation  summoning up the e f f o r t  i n the i n f o r m a l techniques  c o n t r o l e x e r c i s e d by members of her  seems to  of  social  In a more t r a d i t i o n a l  s o c i e t y , she might w e l l appear to have been the v i c t i m of w i t c h c r a f t . what was  But  the p r o c e s s by which the p r o g r e s s i v e m o d i f i c a t i o n of her view o f  i l l n e s s was I left simple.  to  achieved? this  Why  And  where does t h i s  l e a v e the q u e s t i o n of d i s e a s e ? '  informant's house t h i n k i n g t h a t her e x p l a n a t i o n was  should such  a r e g u l a r l y experienced  and  fairly  What s t r e n g t h of a s s o c i a t i o n , or s p e c i f i c i t y  communicated meanings c o u l d t h e r e be  i n t h i s account  informant  t h a t I was  still  so  of  of d i s e a s e / i l l n e s s  c o n n e c t i o n which might e x p l a i n the nature of her d i s e a s e s u s c e p t i b i l i t y ? then r e a l i z e d  too  generalized  phenomenon of r e f u t i n g o t h e r s ' p r o j e c t i o n s of o n e s e l f cause t h i s much d i f f i c u l t y ?  just  c l i n g i n g to the i d e a t h a t a d i s e a s e  I  actually  74 e x i s t e d , t h a t I was working w i t h a d i a l e c t i c a l n o t i o n t h a t I had t o transcend and which my informant had gone some way to r e f u t e . d i s e a s e , t o me, s t i l l commodity-structure, rational  Inflammatory bowel  had the c h a r a c t e r o f what Lukacs would c o n s i d e r as a w i t h a 'phantom o b j e c t i v i t y ' t h a t seemed 'so s t r i c t l y  .... as t o c o n c e a l every t r a c e o f i t s fundamental n a t u r e : the  r e l a t i o n between  people.'1  In my second  i n t e r v i e w , the i d e a o f d i s e a s e as a c u l t u r a l product was  made much c l e a r e r .  T h i s was a c r u c i a l  i n t e r v i e w , because i t seemed t o show  how, i n the e x p e r i e n c e o f a young woman who claimed t o be h e a l e d , the p a r t i a l i t y o f o t h e r ' s r e l a t i o n s h i p w i t h the i n d i v i d u a l tacit  assumptions that t h a t p a r t i a l i t y  template concept  f o r selfhood. of i l l n e s s  i s accompanied by  i s somehow t o be understood  I t also i l l u s t r a t e s , v i v i d l y ,  as a  and i n d e t a i l , how the  i s m o d i f i e d as a p r o c e s s , and the m i s p l a c e d  investment i n  the a u t h o r i t y o f o t h e r s i s r e c o n c i l e d . "Sarah":  a crucial  (Ref: Informant SF:  informant  #2, 'Sarah',  "What do you t h i n k about c o l i t i s ? What does i t mean to you?  other people  symptoms s i n c e .  SF:  What d i d  t h i n k about i t ? "  Resp: I had my l a s t bout  upset  October 3 1 s t )  o f i t seven years ago i n Vancouver and have had no  You know, I t h i n k I had i t a l l my l i f e  ... I used  t o have an  stomach v e r y r e g u l a r l y and d i a r r h o e a q u i t e o f t e n . . . " ( i n t e r r u p t i n g ) "You thought  Resp: "..yes,  t h a t was normal?"  I assumed everybody had bowel movements l i k e t h a t , when I was  18 I was at s e c r e t a r i a l c o l l e g e , a f t e r h a v i n g been out i n the world before that".  a bit  75 SF:  "Out i n the w o r l d ? "  Resp: "Yes, I had been a l a b o r a t o r y t e c h n i c i a n and was doing an e x t e r n a l degree i n haematology, you see I had been encouraged by my mother t o go out to work r a t h e r than go to u n i v e r s i t y , mother a r t s degree would be a b l u e - s t o c k i n g  thought t h a t a woman w i t h an  .. so I went t o the s e c r e t a r i a l  college,  I stayed w i t h r e l a t i v e s and got s i c k and i t was diagnosed as a p p e n d i c i t i s and I had an appendectomy peritonitis hospital. spent  but i t wasn't  f o l l o w e d by a p e l v i c  that at a l l and a week l a t e r I got  abscess, which i n v o l v e d two months i n  That was p r o b a b l y my f i r s t major bout, l o o k i n g back on i t , then I  f i v e years t r a v e l l i n g , Mexico, O r i e n t , A u s t r a l i a , B.C., Tokyo, u s i n g my  secretarial different  skills  and o c c a s i o n a l l y b e i n g s i c k , maybe ( I had thought) due to  foods, I d i d n ' t know.  Then I went back to the U.K. f o r four months  and found that I was homesick f o r Vancouver o f a l l p l a c e s , so I came back t o Vancouver t o work a t " (Omitted: a u n i v e r s i t y ,  i n a department) "as a  s e c r e t a r y , I was l i v i n g w i t h a f e l l o w at the time w i t h m a r r i a g e as a possibility. symptoms. for  I may have been engaged at the time o f the onset o f my  I t h i n k so. Anyway, he had h u r t h i s back, he needed major  surgery  i t and w h i l e he was s i c k I developed my 'usual d i a r r h o e a ' " ( r o l l i n g h e r  e y e s ) " and so I asked one o f the p r o f e s s o r s , a woman who taught studies,  she was a good f r i e n d  classical  at the time, she was an o l d e r woman..."  (Pause). SF:  "Why her"?  Resp. "Well, t h e r e were o t h e r s I c o u l d have asked, there was" ( ' F r e d e r i c k ' ) "and another g i r l who l i v e d w i t h us, but I c o u l d n ' t ask him because he was a bit  squeamish and the g i r l wouldn't have been a p p r o p r i a t e . . "  76 SF:  ( i n t e r r u p t i n g ) " I n what sense?"  Resp: "The me  other g i r l ?  too w e l l , someone who  don't  take me  i n me,  No,  she wouldn't.  would take me  s e r i o u s l y , or d i d n ' t  genuinely interested  she was  English  i n my  been grumbling about my I was  People who  are c l o s e to me  ... the person I d i d ask took an personal l i f e  interest  ... I would b a b y s i t  f o r her,  an o l d e r woman you see, I asked her whether she  thought that d i a r r h o e a and mucus was  girl  seriously.  d i d n ' t know  ... I had been to Greece w i t h them, her and her husband they  were good f r i e n d s , she was  the  I needed someone who  ...  a l s o I was  b l e e d i n g . . . I had  stomach at home, yes, at home w i t h my b o y f r i e n d  t e l l i n g you, w e l l  grumbling I had  normal  , they were sympathetic...  t o l d them about cramps, I d i d n ' t r e a l l y  I was  and  really  f e e l unusual, but i n  f a c t I had thought  the symptoms were normal,  me  NORMAL and that I should go to a d o c t o r , I d i s c o v e r e d one  that  i t was  through my  NOT  f l a t mate, the g i r l ,  sigmoidoscopy... was  I thought  he was  I was  v e r y e f f i c i e n t , he  thought  SF:  "He  ... my  illness  to myself I w i l l never complain o f  (she i s angry) "and  the d o c t o r  (pause)  laughed at you, he was  Resp: "He  told  i s what happens, the d o c t o r spread newspaper a l l over the  f l o o r the INCREDIBLE INDIGNITY OF IT ALL" laughed..."  lady  recommended  going t o d i e when I had t h a t  never r e a l l y e x p l a i n e d , I had  t h i s again i f t h i s  anyway the p r o f e s s o r  laughed at my  the  GP  t o l d me  was  sick, I started  unsympathetic,  response.  Then he gave me  to keep i n touch w i t h him. to vomit, I t o l d my  phoned the d o c t o r .  He was  clinic,  straight  she sent me  away.  what?" a Barium meal ... anyway,  W e l l , b e f o r e the r e s u l t s came i n I  room mate, she r e a l i z e d  There was  I was i l l ,  another d o c t o r i n the same  i n t o h o s p i t a l , VGH,  you know the funny t h i n g  was  ( F r e d e r i c k ) was I was  on the  surgery  a l s o i n h o s p i t a l at the time.  f i f t h f l o o r , he had  .. I was  on  sulphur  came down to see me, s a i d , you know, he  smell  surgeon who  ( F r e d e r i c k ) had  s a i d "YOU  on the t h i r d  floor  ARE  was  t o l d him  and  I was  looking  that we  nauseated, a f t e r a  after  (Frederick)  were engaged and  ONLY IN HERE BECAUSE YOU  ARE  t a u n t ) "and  SO MAD  me  colitis  days a f t e r my  got  so bad  that  a hold was  space of two  a colostomy was  i t would p o i s o n  about, I d i d n ' t  because I was  came to see me  being  on my  i d e a i n t o my  sudden I knew I had  MYSELF" (she  BE  objective got  i d e a of going  to  straightaway i f I could surgeon coming down  e a s i e r , a l l of a  s i c k and  CAN  YOU  at the mercy of  TRUST SOMEONE  major emphasis here) " i t ' s one's own SICKNESS TO ME" OUTSIDER TO choice,  forward, i n s i s t i n g l y ) "and  and  I knew what that  l i k e the  doing i t to myself, i t was  a much more d i f f i c u l t  my  DOING THIS TO MYSELF" (major  SUBJECTIVE I thought, HOW  BODY" (n.b.  leans  I didn't  head t h a t I was  i t seemed l u d i c r o u s TO ALLOW AN  ILLNESS so I had  and  or of h a v i n g a colostomy  something to do with the  EXPERIENCE, SO PERSONAL, INTENSE, MY "that  peritonitis  a c h o i c e , I c o u l d c a r r y on being  COULD NOT  OUTSIDE YOUR OWN  GOT  because once i t , the c o l i t i s ,  tummy, I asked the GP  emphasis) "once I knew I was  WHO  every day  s a i d , i n an  i d e a of t a k i n g sulphur,  leave h o s p i t a l , anyway, i t was  doctors  considered  so young, twenty-seven, and  p u t t i n g the  then saw  weeks, the d o c t o r  the system, h a v i n g had  l i k e the  the beach with a bag  and  and  I  that I went down t o n i n e t y - s e v e n pounds from a hundred  twenty pounds i n the way,  GP  he  ANGRY ABOUT  'FREDERICK' BEING IN HERE" (emphasis, mimicking q u i z z i c a l a few  and  been i n h o s p i t a l f o r three days f o r h i s back  drugs, made me  couple of days, the o r t h o p a e d i c  He was  (she becomes  TAKE CONTROL OF  to TAKE CONTROL OF  PERSONAL agitated) THAT SICKNESS  that meant g e t t i n g out  of  78 hospital. in  I  hospital  realized SF:  had for  that  "Did  Resp.  "No.  I  diet,  back  to  said  I  was  husband  came home hadn't  was  of  work,  same,  is  g i v e n most enough  it,  at  a women who  with it  ASK  i l l  mental  ... was  pees  the  THE Q U E S T I O N "  its  and  accepted I  was  anger  is  there,  dollars  only  to  the have  I  by  ...  I  at  one  was had  just told  ... was  I  feel  her  but  can't  subconscious  anger  being  battle  won t h e r e ,  someone who  flat  mate  my c o u s i n in I  because  'thinks  that  decided so  I  then  that  why,  there  was  you  at  the  i l l  so  know'"  me a  kid  be and  be  to  colitis  healthy, ...  need  when  attached as  a  is  made  can  a psychiatrist they  ask  well-being  expressed  mentally  to  transposing  mentally  not  I  " . . . s t i l l  somewhere...  a stigma  he  I  angry...that  be  her  decided  knows  that  colitis...  suicide  and  hospital,  you know,  was  committing  my  had meant  that  there  are  time,  I was  away  you  as  any  physical  that  expressed  bland  eyes)  I knew  see  shitting  the  only  that  me t h a t  could  to  day  angry...it  that  he  stuck  colitis,  (rolling  believe  because  STAY  and  stayed  this  got  society  being  and y o u  had  it  that  didn't  it  I  to  pants...  so  suicide  ...  pills  worried,  attention, curing  me t o  GP?"  John  were  persuade  (Pause)  your  the  to  argument,  (omitted)....Christ  surgeon  truth  society,  psychiatrist. a million  the  an  'Frederick'  physical...I  ...  committing  at  time  of  tried  sulphur  my f r i e n d s  this  to  from  into  by  . ...o.k.  all  of  far  condition  physically  colitis  how many  wasn't  GP  strong  out,  surgeon  it  accepted  you wanted  I  the  what...."  this  ...there  upset  that  was  transpose  ANGRY  but  HEARD M Y S E L F  inter-related to  not  form,  OUT n o m a t t e r why  and  hard  my m i n d  but  and most  professor,  my m e n t a l  a release  on God knows  and was  LITERALLY back  explain  worked  another  wanted  stupid  the  sign  treatment  I  you  to  I  it's went  would  to give  a  ( g e s t i c u l a t i n g , ) "because they are then p r o f i n the department GP was to  (she waves f i n g e r s ) "the  (omitted) recommended t h i s p s y c h i a t r i s t Dr. K  , my  a g a i n s t i t , he s a i d he d i d n ' t b e l i e v e i n p s y c h i a t r y , I persuaded  g i v e me  it,  'on guard'"  never  a referral. realized  Well I never knew anything  t h a t psychotherapy  s u s p i c i o n t h a t I had  like  i t , or c o u l d be  c o u l d be so p a i n f u l ,  him like  i t bore out ray  transposed mental p a i n to p h y s i c a l p a i n , I had  four  months o f therapy both group and one-to-one and w i t h i n f o u r months the c o l i t i s had  completely  psychiatrist,  disappeared,  and, without  I went v e g e t a r i a n , stopped GP,  well I s t i l l  p a t i e n t , I was your  life,  had  him g i v i n g me  i n s t r u c t i o n s , but w i t h h i s approval  a l l medication  a g a i n s t the p r e s c r i p t i o n from  symptoms but they tapered o f f , I was  on v i d e o tape, I was  your whole l i f e  ( i n t e r r u p t i n g ) " B e f o r e and  such an  my  incredible  on sodium p e n t a t h o l ( t h a t was d r e a d f u l ,  i n f r o n t of you  p s y c h i a t r i s t d i d a b e f o r e and SF:  a c t u a l l y w i t h i n t h r e e weeks of seeing the  i n a c o u p l e o f h o u r s ) and  a f t e r , a v i d e o tape, b e f o r e and  the  after..."  a f t e r what?"  Resp: " W e l l , b e f o r e , I looked r e a l l y o l d , y e l l o w , had odour of decay, I  was  really  top  and  a wreck and  after?  . . w e l l , we  e x p r e s s i n g TRUE ANGER" (major  t r u l y angry,  had  a psychodrama o f me  emphasis h e r e ) "I f i n d  sure I can get s n i t t y and  so on, but  b a r r e l s . . . soon as I got that f a r , there was of  I'm  p a i n on a mental l e v e l as on a p h y s i c a l  it difficult  to be  t a l k i n g about both  no more c o l i t i s ,  a b a t t l e , I never worked so hard on a mental l e v e l ,  blowing my  i t was  a hell  I went through  level...well, that't  i t , end  as much of  s t o r y , no more c o l i t i s " . SF:  "More, p l e a s e " .  Resp: " W e l l , I d i d a l l the work on the c o l i t i s myself  .. but  i t wasn't  80  enough, I wanted t o make sure that I d i d n ' t have i t a g a i n , I wanted t o know where the anger came from, i t i s i n r e c o g n i z i n g that the world wouldn't apart when anger i s expressed, t h a t ' s what c o l i t i s  fall  i s a l l about, the  EXPRESSION OR SUPPRESSION OF ANGER" (major emphasis)  "and you know,  e x p r e s s i o n , something w i l l h o l d you back when you are angry, so you do  little  c h i l d i s h trantrums and the worst t h i n g you do i s t o s h i t , but t h e r e i s no way of  concealing  i t , the c o l i t i s  those symptoms.". SF:  that  i s , because you s m e l l and have a l l o f  (Pause)  "And the source o f your anger?  Resp. "My anger goes way back,  I don't understand".  i n my p a r t i c u l a r  was shunted o f f to a housekeeper's  c h i l d h o o d I wasn't wanted, I  c a r e , I was a mistake  really...."  SF: ( i n t e r r u p t i n g ) "A mistake". Resp: "Yes, my mother was t h i r t y - t w o when I was born, the o t h e r c h i l d r e n were ten  y e a r s o l d e r , I was unplanned, my mother d i d n ' t have enough time or  p a t i e n c e w i t h me.  When ' F r e d e r i c k ' had h i s o p e r a t i o n and he was s i c k ,  there  were two t h i n g s going on, one he was g e t t i n g a l l the a t t t e n t i o n , and you know, mother used t o have b r o n c h i a l asthma and I had t o g i v e h e r i n j e c t i o n s , I  r e s e n t e d that,- i f anybody I am c l o s e t o gets s i c k . . . " (Pause) "and I get  angry because I have to care f o r them".  (Pause).  SF: "You mean, anybody? and, ' c l o s e t o ' , what does t h a t mean?" Resp: "True c a r i n g , when t h e r e i s something at s t a k e , l i k e  friendship."  (Pause) SF: ( a t t e m p t i n g w i t ) " I wouldn't Resp: "No. problems  be i n that c a t e g o r y , then, r e a l l y " .  There are two c a t e g o r i e s o f p e o p l e . I t ' s e a s i e r t o t e l l  t o a s t r a n g e r , t h e i r judgement  i s s u p e r i o r sometimes.  your  You know,  81 f a m i l i a r i t y sometimes breeds  contempt, i n c l o s e f r i e n d s h i p s I found  ' g u i l t y of the unknown s i n ' . . " c h i l d h o o d , and  ( s e l f - m o c k i n g ) " t h i s connects  a l s o the f e a r o f l o s i n g someone c l o s e to me,  w i t h not b e i n g wanted as a c h i l d , which connects You  see, FEAR ALWAYS COMES INTO IT".  SF: "And  myself  up w i t h  my  t h i s connects  up  up w i t h a f e a r of r e j e c t i o n .  (Pause).  what happened to ' F r e d e r i c k ' ? "  Resp: " I had  to be k i t c h e n , bed,  e x p r e s s i o n , he was  incredibly  church  and k i n d e r , you know, the German  ambitious,  I was  going to be  the  'executive  w i f e ' " (here she mimics, s a t i r i c a l d r a m a t i z a t i o n ) "with a l l t h a t h i g h expectation  ... w e l l t h a t i s e v e r y t h i n g I am NOT,  i n t o a l l k i n d s o f v a r i o u s p r o j e c t s , I was  I'm  light,  flighty,  I am  a group l e a d e r i n p s y c h o l o g i c a l  therapy s e s s i o n s . " (Pause) SF: "And  what are you doing now,  i n terms of ' p r o j e c t s ' ? "  Resp: "Well I am busy with the (Omitted: to keep f i t c l a s s e s , dog Mondays, weight watchers,  obedience  t h e a t r e group) as a v o l u n t e e r , I go  training, a l l sorts  Tuesdays dog  obedience  ... I'm  normally  f o l l o w e d by keep  out  fit,  Wednesdays f r e e , Thursdays n i g h t s c h o o l , F r i d a y s ( t h e a t r e group) Saturdays Sundays I r i d e , I have a h o r s e . " SF: " W e l l , thanks..  Resp: "Sure.  (Pause)  It's getting a l i t t l e  s o c i a l m a t t e r s were connected  late.  Could you j u s t summarize  to your r e c o v e r y f o r me  When ' F r e d e r i c k ' l e f t ,  were o f f , the t h e r a p i s t had  or  I felt  please?"  so much r e l i e f ,  s a i d , POSTPONE THE  how  the p r e s s u r e s  WEDDING he s a i d ,  i f you  go  ahead w i t h the wedding you won't get therapy, but you w i l l be back i n ten years time, you w i l l be knocking 'Frederick'  ... you  at my  door...THEN a c t u a l l y  see, I had been w i t h him  s p l i t t i n g up with  for five years."  (Pause)  82 SF:  "Did you  blame y o u r s e l f f o r that  Resp: "Blame?  Yes  i r r i t a n t , he was anything silly, by  you  he was  put me  s o r t of e a t i n g my  never  DID  i n a martyr t r a p . I t sounds  i n t e s t i n e s , t h a t ' s what I mean  w e l l of course what r e a l l y bothered me  of my  my  body to an o u t s i d e FORCE, and  c o n t r o l ...  I didn't  like this  .. f e a r of death came i n t o i t ...  real possibility elements I was other  ...  fighting  people had  I had  l e d up  FURTHER OUT  OF  SF: "Do  still  you  Resp: "No.  to the c o l i t i s  CONTROL by my  i t was  a PERSONAL  I knew I c o u l d d i e  ... death  was  basic  an everyday occurrence  to take i t a l l i n t o my  l i v e or d i own  hands  than t h a t , i t goes back to UTTER  ... THINGS GETTING OUT  getting c o l i t i s . "  OF  CONTROL AND  GOT  (Pause)  have psychotherapy?" l i a b l e to get  the K r e i d e k r e i s "  colitis  ( t r a n . 'chalk  expression,  a p r o t e c t i v e c i r c l e you  i t s OK,  so long  but  ...  such a b i g hand i n d e c i d i n g whether I should  I know that I am  surrounded by  in hospital  an ABSTRACT FORCE!...  ...DOCTORS... to them i t was  become j u v e n i l e , or even e a r l i e r  DESPAIR that  about being  a r e a l shock ... here I was.... there were r e a l  OTHER PEOPLE that gave the m o t i v a t i o n  it's  know, he  the  (Pause).  surrendering  sickness  ...  know l i t e r a l l y he was  "And?"  t h i n g s out  and  1  so DEMANDING of time, e f f o r t , you  perhaps, but  Resp: "And, was  'Frederick ,  i n the house, no housework, he  IRRITANT".  SF:  I blamed  i n some way?"  a g a i n , but  c i r c l e ' ) "you  know,  that p r o t e c t i v e c i r c l e  you  I'm  know, the German  draw around y o u r s e l f , people can  as you have t h a t c i r c l e around you,  something I came up w i t h ,  you  come i n  are IN CONTROL  i d e a , then I was  about the concept, I d i d n ' t , I hadn't heard about that b e f o r e " .  told  (Pause)  83 SF:  "So where does c o l i t i s  Resp: " S o c i e t y .  come i n ? "  S o c i e t y g i v e s you c o l i t i s ,  the demands made on you, but you  have to have a p r e d i s p o s i t i o n f o r i t , my grandmother d i e d o f c o l i t i s , mother t o l d me SF:  my  that...."  ( i n t e r r u p t i n g ) "and you never connected  connected i t up w i t h your c h i l d h o o d  i t up? you, or your mother never  diarrhoea?"  Resp: "No". SF:  "Thanks v e r y much, I'd b e t t e r be g o i n g  Resp: "One more t h i n g .  You know, some people t h i n k I am c r a z y when I t a l k  about t h i s , whaddya c a l l circle  around me.  (Interview  now".  i t , e x i s t e n t i a l business,  my e x p e r i e n c e , and that  I don't d i s c u s s i t " .  time: three  hours).  R e f l e c t i o n s on an account In attempting t o come to terms w i t h t h i s n a r r a t i v e , i n r e l a t i n g the  i n f o r m a t i o n which I had a l r e a d y  to r e f l e c t ,  obtained  from other  sources,  i t to  I was  f i r s t o f a l l , on the seemingly enormous g u l f s e p a r a t i n g the  character  o f knowledge conveyed i n the m e d i c a l l i t e r a t u r e and knowledge  contained  i n t h i s account.  I n Sarah's v e r s i o n , b i o m e d i c a l  beliefs  a c t i o n s a s s o c i a t e d w i t h them) can be seen as symbolic c o n s t r u c t s , by  the a u t h o r i t y vested  physicians  forced  (and the reinforced  i n them as a f u n c t i o n o f the accepted c l a i m made by  to be i n the best  p o s i t i o n t o d e f i n e the meaning o f i l l n e s s .  r e a c t i o n to her account was to be shocked by her c l i n i c a l i m p l i c a t i o n s o f the apparent  My  e x p e r i e n c e and the  ' d i a g n o s t i c mistake', which, i f i t had not been  c o r r e c t e d , might had l e d to even more unnecessary s u r g e r y . t r o u b l i n g , was the p o s s i b i l i t y  that other  Even more  people might not have been so  84 f o r t u n a t e as to have had Secondly,  I was  an o p p o r t u n i t y to forgo such o p e r a t i o n s .  confused  e x i s t e n t i a l account had  as to why  not been r e f l e c t e d  the d i s c u s s i o n of u l c e r a t i v e c o l i t i s c o u l d be understood i s s u e s which arose explanations  i n any  s i g n i f i c a n t way  i n the l i t e r a t u r e .  ' e x i s t e n t i a l b u s i n e s s ' had ( o r had  little  found  personnel  was  scope i n engaging i n a d i s c u s s i o n about her  the p r e o c c u p a t i o n  e x p l a n a t i o n s p r o v i d e d by the  which these p e r s o n n e l  'disease-model'  and  easily the  task.  therapy? troubling  i n the psychotherapy she r e c e i v e d to d e a l w i t h the source of her  anger, t h e r e seemed to be  an a p p r o p r i a t e l o g i c a l  sense t h a t the l o n g - s t a n d i n g correctly  feelings,  c l e a r l y showed t h a t attempts at  In her e x p l a n a t i o n of what Sarah d i s c o v e r e d as to what was her,  her  concerned,  e x h i b i t e d with  such a d i s c u s s i o n would have been, to say the l e a s t , an u p h i l l resolved in  that  I t a l s o seemed  which at the time of her d i a g n o s i s and h o s p i t a l i z a t i o n , were not  A double-bind  of  been i n t e r p r e t e d by  been?) 'crazy'.  t h a t so f a r as communication w i t h m e d i c a l  e x p r e s s i b l e : and  i n any  T h i s I thought,  i n Sarah's n a r r a t i v e , and because she had  r e g a r d i n g the  that there was  i n the  l a r g e l y because of the h i g h l y p r i v a t e c h a r a c t e r of the  o t h e r s as an i n d i c a t i o n that she was important  the i n f o r m a t i o n c o n t a i n e d  fit.  Practically,  absence of her p h y s i o p a t h o l o g i c a l symptoms  a t t r i b u t a b l e to the psychotherapy, which had  a number of dilemmas.  Pre-eminent among these was  d e c i s i o n to sever her r e l a t i o n s h i p w i t h her r e l a t i o n s h i p problematic?  The  fiance.  helped  her  The  the r a t h e r s t r a i g h t f o r w a r d But why,  or how  was  answer to that q u e s t i o n appeared to be  ambiguity  was  was  to r e s o l v e  i n the fundamental c o n f l i c t between some s o r t of s e n s u a l a t t r a c t i o n rational disaffection.  i t made  i n h e r e n t i n her obvious  this  found  and  distaste  85 f o r the p e r s o n a l i t y and experience,  a t t i t u d e s of the o b j e c t o f her  i t seemed to me,  'affection .  m i r r o r e d the c i r c u m s t a n c e s  i n h i s c l a s s i c work on the n a t u r e of the  d e s c r i b e d by  'double-bind'.  always takes p l a c e i n some context which has that  i t is structured.  or metacontext, and of incongruence  But  He  proposes  learning  such l e a r n i n g a l s o o c c u r s w i t h i n a wider  between context and metacontext, the i n d i v i d u a l  The d o u b l e - b i n d  or i n the wrong way'.  of  i n which  context,  such a sequence of c o n t e x t s i s an open s e r i e s .  f o r the wrong reasons  In case  i s faced with  'or of b e i n g  right  (Bateson 1972:245).  theory has of course been e l a b o r a t e d upon i n the work of  L a i n g and o t h e r s , who  s u b s c r i b e to the s o - c a l l e d  ' a n t i - p s y c h i a t r i c ' s c h o o l of  Here emphasis i s p l a c e d on the i n v e s t i g a t i o n of the e x i s t e n t i a l  phenomenological attempting through  that  one  formal c h a r a c t e r i s t i c s , i . e . ,  the dilemma e i t h e r of b e i n g wrong i n the primary c o n t e x t  thought.  Bateson,  For Bateson,  the major t a n g l e s i n human communication occurs because of the way i n t e r p r e t i v e r u l e s f o r a c t i o n are m i s a p p l i e d .  This  1  circumstances  to d e f i n e how  the f u n c t i o n i n g of the i n d i v i d u a l logic,  Rather  i s , analysis  than proceeds  forms of r a t i o n a l i z a t i o n are l e a r n e d and  i n t e r a c t i o n w i t h o t h e r s and  Using this  experience.  ' r a t i o n a l ' an i n d i v i d u a l  u n d e r s t a n d i n g how  i n symbolic  of everyday  and  produced  the consequences t h i s process has f o r  a c t o r ' s a f f e c t i v e and c o g n i t i v e s t a t e s . 2  i t c o u l d be argued  t h a t Sarah's  s y s t e m a t i c and p a i n f u l process of s e l f - e x a m i n a t i o n was  e x i s t e n c e p r i o r to her marked by f e a r and  an  u n w i l l i n g n e s s or i n a b i l i t y t o d e a l w i t h the a u t h o r i t a t i v e demands made of her by her f i a n c e .  Torn between the acceptance  o f the s o c i a l r o l e p r o j e c t e d f o r  her as a f u t u r e w i f e ('the  executive wife  and k i n d e r ' ) and  t h a t t h i s r a n counter  selfhood  ('that  the sense  .. I had  to be k i t c h e n , bed,  to her more g e n e r a l sense  i s e v e r y t h i n g I am NOT ), t o g e t h e r w i t h the i n c h o a t e 1  church  state  of  86 which t h i s produced which she was  i n terms of her s e n s u a l self-knowledge,  presented was  e i t h e r t o deny the r o l e , or to  r e c o n s t r u c t her o r i e n t a t i o n to s o c i a l  the c h o i c e with critically  a u t h o r i t y and to a s s e r t  autonomy over  her body, her e m o t i o n a l i t y and her r e l a t i o n s h i p s w i t h o t h e r s . T h i s r a t i o n a l e which I produced  i s , f o r the most p a r t , an e l a b o r a t i o n on  the cosmology which Sarah h e r s e l f had procedures clearly  which had brought  advocated  cosmology?  Was  And  to d e s c r i b e the  illness  the t r u t h - v a l u e of  this  or d i d i t r e p r e s e n t an a p p r o p r i a t e schema w i t h  the p s y c h o s o c i a l dynamics of o t h e r IBD  i n what ways c o u l d her more g e n e r a l  I l l n e s s experiences  a viewpoint  set of e x p l a n a t i o n s which had  the b i o m e d i c a l d e f i n i t i o n d i s c a r d e d ?  the c u l t u r a l context  symbolic  and her cure and  But what was  i t simply a p a r t i c u l a r i s t i c  which to understand was  about her  by her t h e r a p i s t .  r e l e v a n c e o n l y f o r Sarah,  and why  used  Why  the  sufferers?  How  physiopathology?  ' l e a r n i n g e x p e r i e n c e ' be r e l a t e d  to  i n which i t occurred? and  formal knowledge of IBD:  p o s s i b l e connections  In r e f e r r i n g back to the p s y c h i a t r i c and p s y c h o a n a l y t i c accounts which I had  read, and r e l a t i n g those to the nature of the l i f e - p r o b l e m which  had  identified  and c o n f r o n t e d , my  s e l f - p e r c e p t i o n and c o g n i t i o n was  i m p r e s s i o n was  Sarah  t h a t the a t t e n t i o n p a i d to  w e l l - p l a c e d , but d i s t o r t e d by  the  c h a r a c t e r i z a t i o n s and c r y p t i c r e d u c t i o n i s t  r e p o r t s of p a t i e n t s '  experiences:  g i v e n the c i r c u m s t a n c e s  found h e r s e l f , I was  prompted to  i n which Sarah had  c o n s i d e r what might have been the l i f e  c o n t e x t s of the i n d i v i d u a l s whose  behaviour had been so n e a t l y c r y s t a l l i z e d p s y c h o t i c ' and/or be  'schizophrenic'.  and r a t i o n a l i z e d  as  'grossly  N e v e r t h e l e s s , t h e r e were c o n n e c t i o n s  found between those a p p r a i s a l s of IBD  to  s u f f e r e r s ' p s y c h o s o c i a l s t a t u s which  87 focussed  on the r e f l e x i v e and  from them, and  e x p e r i e n t i a l m a t e r i a l which had  elements of Sarah's account, which would support  isomorphic i n t e r p r e t a t i o n and not  simply  sense, Sarah's i l l n e s s experience  was  f i g u r e s i n her  helplessness'  a strictly  indeed  'an outbreak o f emotional d i s t u r b a n c e s ' key  been e l i c i t e d  and which i n v o l v e d  accompanied and  precisely,  and  depth of her  more i m p o r t a n t l y ,  i t seemed to me,  made these a t t r i b u t i o n s the s u b j e c t of her as p r o b l e m a t i c  and  had  resolved  symbolizing  was  the  exhibited.  Sarah had  of axioms r e g a r d i n g her prophylactic value.  t h e r a p i s t , she had  c r i t i c i z e m e d i c a l and  l i f e which o t h e r IBD  that Sarah  had  acknowledged them  been a b l e to produce a helped  In t h i s process, She  had  social  her  to  solve  s u f f e r e r s might w e l l have  a l s o been able to c r e a t e and  emotional and  major f e a t o f u n d e r s t a n d i n g .  But more  fact  t h e o r i z i n g , had  r e n d i t i o n o f her c i r c u m s t a n c e s which had  the k i n d of problems i n her simply  sketch.  the  them.  With some d i r e c t i o n from her dramaturgical  on  'a sense of  l o s s of someone  autobiographical  this  'a f i x a t i o n  dependency' (Wittkower), i f these a t t r i b u t i o n s are i n v e s t e d with p a r t i c u l a r c o l o u r and  In  p r e c i p i t a t e d by  (Murray) which showed  'the  general  i n d i v i d u a l one.  s o c i a l environment' accompanied by  (Engel)  a  adopt a n o v e l  l i f e which had  therapeutic  i t seemed to me,  she had  become c o n f i d e n t  of her power to  s o c i a l p r e s c r i p t i o n s , and  i n so d o i n g ,  set and  accomplished  to develop an  autonomous p e r s p e c t i v e . Discarding diagnosis:  the p e r s o n a l i z i n g  process  Perhaps the b i g g e s t o b s t a c l e which she had index o f s e l f h o o d  to overcome was  i n the m e d i c a l d e f i n i t i o n s which had  This involved a separation,  i n consciousness,  to f i n d some  been made of  of the theory  her.  of meaning  a  88 expressed medical  i n the d i a g n o s i s from the s u b j e c t i v e a p p r a i s a l of her symptoms.  terms, the  ' s i g n ' of her d i a r r h o e a was  c a t e g o r y f o r which i t was to be  a 'symptom . 1  The  l i n k e d d i r e c t l y to the d i s e a s e  course of her pathology  f o l l o w i n g the standard and e s t a b l i s h e d r o u t e towards  the attendant p r o g n o s i s i n d i c a t i n g s u r g i c a l i n t e r p r e t a t i o n , Sarah  substituted  In  appeared  ' c h r o n i c i t y ' with  intervention.  In d i s c a r d i n g t h i s  f o r i t a m e t a p h o r i c a l and  symbolic  a c c o u n t i n g which i s more o f t e n a s s o c i a t e d , i n anthropology, w i t h the medical epistemology scientific  of non-Western c u l t u r a l  and n a t u r a l i s t i c  systems of b e l i e f , than with  approach t o modern biomedicine.3  r e j e c t i o n of the b i o m e d i c a l d e f i n i t i o n o f her body was  But  the the  not, i t seemed t o  i n any way  separated o f f from the o v e r a l l metamorphosis of her sense  identity.  Her  r e - o r i e n t a t i o n , which allowed  a u t h o r i t a t i v e p r e s c r i p t i o n s of s e l f , was to s u b s t i t u t e a s u r r e a l i s t  f o r the r e p u d i a t i o n of  of any  comprehensive enough to enable  her  i n t e r p r e t a t i o n of her i n f l a m e d bowel i n p l a c e of  the e m p i r i c a l symptomatology pressed upon her by m e d i c a l The  me,  personnel.  a n a l y t i c a l v a l u e of the c o n v e r s i o n phenomenon  In many r e s p e c t s , I began to see, i n Sarah's  account,  an i l l u s t r a t i o n i n  microcosm of the t r a n s f o r m a t i o n s i n s e l f h o o d which are more u s u a l l y associated experience.  i n psychology Now  and  anthropology w i t h c o n v e r s i o n as a r e l i g i o u s  c o n v e r s i o n , even when e x h i b i t e d most d r a m a t i c a l l y i n a  r e l i g i o u s c o n t e x t , has  a l s o been taken as a r e f e r e n c e p o i n t from which to  examine c e r t a i n p r o c e s s e s which are seen, or b e l i e v e d , to accompany i t . J u l e s - R o s e t t e p o i n t s out, c o n v e r s i o n i n i t s s o c i a l  aspect  i s a k i n t o r i t e s of  passage, where the acknowledgement i s made t h a t an i n d i v i d u a l has moved one  s t a t u s and  s o c i a l m i l i e u to another; but  As  i t i s also importantly  from  89 s u b j e c t i v e , where i t can be viewed as a ' s e l f - c o n s c i o u s l y d e f i n e d change  which r e l a t e s to a 'perceived  1  body of knowledge and  that become a v a i l a b l e to the c o n v e r t ' . Pearce (1973: 7,18) to the  fact  and  from the s h i f t  is interpreted  realm of thought and  specific  shock' i n the r e c o g n i t i o n  possible  (1975:135).  C o n v e r s i o n , again as point  that  of the  'a new  f o r c e f o r moral change, as the  argument, which I w i l l that  W a l l a c e with  there  as  'mind').  transformation  of  as a r e v i t a l i z i n g such changes always  i n terms of p h y s i c a l w e l l - b e i n g .  His  r e t u r n to at a l a t e r stage i n t h i s d i s s e r t a t i o n , i s  i s an e f f o r t  endocrinological  of leadership  a  reorganization  the  focus of h i s argument t h a t  seem to i n v o l v e an enormous c o s t  between  order of e x p e r i e n c e ' i s  f u n c t i o n i n g of an i n d i v i d u a l ' s mazeway (or  i n t o one  attention  a c t i o n to another, a moment of  a r e l i g i o u s experience, provided  drunken l i f e - s t y l e  citing  'a powerful c l a s h r e s u l t i n g  Here, Wallace took the biography of a Seneca c h i e f and a d i s s o l u t e and  of  reality In  a l s o draws  of d e p a r t u r e f o r h i s well-known t h e s i s on p e r c e p t u a l  a manifestation  132).  as a d i s j u n c t u r e  assumptions', i t appears to be  from one  o r d e r of  1975:  Schutz (1967:231), J u l e s - R o s e t t e  that when c o n v e r s i o n  'types of r e a l i t y  (Jules-Rosette  doctrine  expended, i n b i o p h y s i c a l  terms, i n v o l v i n g  changes ( e x p e c i a l l y a d r e n a l i n metabolism) which i s needed to  f a c i l i t a t e mazeway r e s y n t h e s i s . e f f e c t s , which accompany the  T h i s , i n t u r n , produces  psychological  sorting-out  physiopathological  process  (Wallace  1956:636). Conversion,, s o c i a l c o n t e x t s , Now  although the  moral r u l e s and  concept of c o n v e r s i o n ,  o n t o g e n e s i s seemed v a l u a b l e  axioms of and  the  as a means to p r o v i d e me  grasp of Sarah's c i r c u m s t a n c e s , there were s t i l l  thought  attendant with an  idea  of  intelligible  a number of q u e s t i o n s which  90 demanded a t t e n t i o n . i t d i d not  and  Her  new  c o u l d not  developed should  knowledge was  occur  not  sui generis.  acquired  The  new  i n a s o c i a l vacuum,  moral r u l e s she  a l s o be connected, I thought, to the mode by which  viewed her body, both b e f o r e  and  a f t e r her  'conversion'.  And  adaptive be  form of  ' s e l f h o o d ' was,  demands o f her body and  living  a happier  and wholesome  as a symbolic  she  finally, i t  seemed n e c e s s a r y , from a comparative a n t h r o p o l o g i c a l v i e w p o i n t , what t h i s new  had  construct  to examine  apposite  the s o c i a l m i l i e u i n which she  to  the  seemed now  to  life.  There i s , i n developmental psychology, a theory of l e a r n i n g which s t r e s s e s the concerning  importance of s o c i a l  i n t e r a c t i o n i n the p r o d u c t i o n  autonomous p r i n c i p l e s of j u s t i c e .  importance of involvement i n v a r y i n g development, the theory simply  I n arguing  s o c i a l contexts  stands opposed to the  'abstracted' c o l l e c t i v i t y . ^  perspective  the t h e o r i e s o f Mannheim and with new  the  s o c i o l o g y of knowledge.5  p e r s p e c t i v e was  gained  others,  i n her d i s c u s s i o n s w i t h  quite different  from her  this  adherence t o , The  the  importance of  as the c a t a l y s t f o r the  of s o c i a l m o r a l i t i e s , i s a l s o found i n i n dealing with  the problems  i t seemed that the g e n e r a t i o n  developed as she  critical  in expediting  f o r , and  a c t i v e membership i n heterogenous s o c i a l contexts development of a c r i t i c a l  f o r the  argument t h a t m o r a l i t y c o n s i s t s  i n the e x h i b i t i o n of g e n e r a l i z e d r e s p e c t  normative c o n v e n t i o n s of the  of a m o r a l i t y  obtained  i n d i v i d u a l s who  and  incorporated  occupied  associated of Sarah's  knowledge  s o c i a l vantage p o i n t s  own.  The moral r u l e s which she  appears to have r e j e c t e d , or to have  considered  i n r e t r o s p e c t as i n a p p r o p r i a t e , e n t a i l e d a viewpoint  convention  and m o r a l i t y were not  separable.  Although she may  i n which  have been  91  r e l a t i v e l y content  t o i n t e r p r e t moral r u l e s as e x p r e s s i v e symbols o f  adherence t o s o c i a l c o n v e n t i o n r e p l a c i n g these important  i n the p a s t , i t seems as i f t h e p o s s i b i l i t y o f  i m p e r a t i v e s with other o p t i o n s o n l y became d r a s t i c a l l y  when faced with the p r o s p e c t s  o f complying w i t h h e r f i a n c e ' s  expectations of her. In b e g i n n i n g the reasons  t o see Sarah's new p e r s p e c t i v e as a g e n e r a l i z e d phenomenon,  f o r h e r r e j e c t i o n o f both  the medical  and s o c i a l  representations  can be c o l l a p s e d i n t o one p h i l o s o p h i c a l axiom: that o f the s u b s t i t u t i o n o f c o n s e r v a t i v e r e a l i s m f o r r a d i c a l nominalism.^ no  Her p h y s i c a l symptoms were  longer i n e x t r i c a b l y t i e d up t o the a u t h o r i t a t i v e l y underscored  of h e r b i o l o g i c a l derived  description  e x i s t e n c e , anymore than h e r p e r s o n a l i t y was l i k e l y  t o be  from an e q u a l l y narrow and f a l l a c i o u s i n t e r p r e t a t i o n o f the s o c i a l  meaning o f h e r p h y s i c a l and b i o l o g i c a l  endowment  as a woman.  the r e s t r i c t i v e t h e s i s , she had been able t o fuse t o g e t h e r  In d i s c a r d i n g  a new  imaginative  m a t r i x , which l i n k e d her e m o t i o n a l i t y , her p h y s i c a l i t y and her s o c i a l i t y together. Reflexivity, reification Finally, abilities  and IBD as a c u l t u r a l  artifact  i n d e a l i n g with the f a c t o f Sarah's emergent  interpretive  and the i s s u e s which c o n f r o n t e d h e r , i t seemed necessary t o  c o n s i d e r how h e r b i o g r a p h i c a l i l l n e s s c a r e e r might be g i v e n both universal  and a c u l t u r a l l y  a culturally  s p e c i f i c meaning.  With r e s p e c t t o the u n i v e r s a l , and, t h e r e f o r e , r a t h e r a b s t r a c t t h e o r e t i c a l s i g n i f i c a n c e o f her e x p e r i e n c e ,  i t i s easy t o r e c o g n i z e the  cogency o f the l o n g - s t a n d i n g debate i n anthropology between c o n s c i o u s n e s s ,  as t o the c o n n e c t i o n s  s o c i a l e x i s t e n c e , knowledge and a u t h o r i t y .  Simply  92 put,  it  seems  dialectical  segment each  along  points  interest,  generally of  with  out,  their  necessary  segment  interests of  attach  and become  1961:196). made  to  facts,  more  In  with  the  economic  reflexivity, thought,  and  tied life for  underscores reflection  thus:  as  the  that  having  of,  contrast,  the  as  and  the  understanding  mostly  of  of  social  knowledge  question  of  the  temporal  to  have  as  language and  been  and of  thinkers  formation  of  the  praxis  politically  oriented  mode  of  participation  in  time  incongruence  and  of  involvement  place.  involved  in  a  of  of  between  to  social  reified  organization,  interpretations  peculiar  ability  question  paradox  and  the  the  The  importance  activity  the  nature.^  and  the  constituted  in  because  (Sapir  efforts  historians see  the  of a  integrity:  with  appear  and  value'  authority  can  as  duality  pattern  psychic  to  become  more h i s t o r i c a l l y of  cultural  individual  social  rationalization  the  the  the  who  be  viewpoint,  sustain  couched  the  this  to  persuasion,  must  are  subject's  interactionists,  by  person  the  institutions  shared  and  a person-defining  meanings  concern,  political  distinction  resistance  symbolic  social  this  seen  provisions  subjective  society  discover  necessary  aware  however,  generating the  is  to  that  From  to  political in  of  This  is,  stresses  or  activity  how  result  idealism,  historical  social  work  that  behaviour  personality  coercive.^  consciousnes of  the  understand  sometimes social  to,  of  interpreted  self-recognition value  and  continuity.  'a  those  acknowledged  other  is  behaviour  of  each  it  between  of  one  be  aspects  maintained Sapir  to  in  that  Weber action  and  93  " R e f l e c t i v e k n o w l e d g e , e v e n o f o n e ' s own e x p e r i e n c e , is nowhere and n e v e r a l i t e r a l l y 'repeated experience' or a s i m p l e ' p h o t o g r a p h ' o f what was e x p e r i e n c e d ; t h e ' e x p e r i e n c e ' w h e n i t i s made i n t o an ' o b j e c t ' , acquires p e r s p e c t i v e s and i n t e r r e l a t i o n s h i p s w h i c h were not 'known' in the experience i t s e l f " (Weber 1 9 4 9 : 1 7 8 ) .  This,  in  turn,  respective  bodies  categories  or  to  which  in  post-hoc In  of  such  treatment  possibility  of  and  in  the  But  in  this,  a definition process,  in  made  What of  for  a biological  as  of  of  not  of  realize  social  the  until  some  the  is  degree  they  engage  perspective  to  the  a  in  seem t o  which an  may p r e d i s p o s e  be  deny  element the  is,  the of  actor  to  humanistic terms  forms  in  of  of the  doctor-patient  scientific can be h e l d  biographical  Sarah,  a phenotypical in  is  there  social  enacted.  definitive  of  actions  versus  and  lives,  which  there  question  expressed  meanings  to  extent,  preference  Sarah  thought  compliance  begs  conscience  dysfunction  yet  in which  forms  socialization  the  their  reifications  self-expression  authoritarian  communicated  herself  the  To  authority  personal was  an  and  context  of  turn,  and  this the  as  as  and  experience.9  cultural  an o n t o l o g i c a l  singular  lost.  their  individuals  treated  negates  individual  to  that  others,  demanding  is,  which  claims  epistemology,  often  that  biomedicine,  patient's  or  enculturation  institutions  or  criticism  Fromm r e f e r s  individual  of  and  by  self-expression.^  conscience.H  In  denies,  of  coercive,  involved, what  things  particular  a history  possibility  considered  physical  more  particularly  adopt  may b e  the  reformulations  the  course,  choice  as  raises  which  but  what  character to,  she  of  which  existence  exemplification no  in  relationships  in  disease the culture  is  also  rejected,  of  genotypical  incorporation  a of  selfhood  was  was  94 e i t h e r warranted or j u s t i f i e d  i n terms of t h e o r e t i c a l e x p l a n a t i o n .  had  accepted  i t , then a requirement  her  s e l f h o o d would have seemed p a t e n t l y So f a r , i n my  v o i c e , how  my  to view her  If  she  symptoms as an e x p r e s s i o n of  absurd.  argument, I have attempted to d e s c r i b e , i n a r e f l e x i v e  c u r i o s i t y regarding  inflammatory  bowel d i s e a s e  l e d me  to  examine the r a t h e r narrow q u e s t i o n as to whether c e r t a i n a u t h o r i t i e s considered  IBD  to i l l u s t r a t e ,  to have i t s g e n e s i s  i n p h y s i c a l or p s y c h o l o g i c a l domains:  through a p a r t i c u l a r n a r r a t i v e , that what was  i l l n e s s career raised Rather than b e i n g  at stake  q u e s t i o n s which went f a r beyond t h a t i n i t i a l  i n an  focus.  seen as a d i s e a s e , u l c e r a t i v e c o l i t i s becomes a phenomenon  which i s s u b j e c t to i n t e r p r e t a t i o n as a b i o p s y c h o s o c i o c u l t u r a l complex. will  argue that  'Crohn's d i s e a s e ' i s s u b j e c t to a s i m i l a r  the f o l l o w i n g c h a p t e r ,  subsequent chapters  allowed  I w i l l deal with  the p r i c e which they c o n t i n u e  them to escape from the cage.  the circumstance  to pay  I  interpretation.  I s h a l l r e t u r n to r e l a t e the n a r r a t e d e x p e r i e n c e s  i n d i v i d u a l s whose r e f l e x i v i t y has  and  then  of those who  f o r t h e i r entrapment.  In of In  have not,  95  FOOTNOTES  TO C H A P T E R  IV  1.  See L u k a c s , G . , ' R e i f i c a t i o n and t h e c l a s s c o n s c i o u s n e s s o f t h e proletariat'. I n h i s H i s t o r y and C l a s s C o n s c i o u s n e s s , L o n d o n : M e r l i n Press, 1971:83-222.  2.  To be f o u n d i n t h e w o r k o f R o n a l d D. L a i n g , s e e , f o r e x a m p l e , The D i v i d e d S e l f Harmondsworth: P e l i c a n , 1965, The P o l i t i c s of E x p e r i e n c e and t h e B i r d o f P a r a d i s e H a r m o n d s w o r t h : P e n g u i n , 1967 and o t h e r s . The p s y c h o t h e r a p e u t i c approach based on t h i s existential-phenomenological v i e w i s u n d e r t a k e n by t h e P h i l a d e l p h i a A s s o c i a t i o n , London, o f w h i c h R.D. L a i n g i s c h a i r m a n and f o u n d e r member.  3.  T h e r e i s a l a r g e and g r o w i n g amount o f l i t e r a t u r e w h i c h d e a l s w i t h t h e q u e s t i o n o f c o m p a r a t i v e h e a l t h - c a r e s y s t e m s and modes o f h e a l i n g . I had i n mind h e r e , p a r t i c u l a r l y , L e v i - S t r a u s s ' d e s c r i p t i o n of the r o l e of the shaman i n c u r i n g a Cuna woman. I n c o n j u r i n g up a p s y c h o d r a m a o f m a l e v o l e n t and b e n e f i c e n t m o n s t e r s and s p i r i t s , t h e shaman was a b l e t o 'induce the r e l e a s e of the p h y s i o l o g i c a l process, that i s , the r e o r g a n i z a t i o n , in a favourable d i r e c t i o n , of the process to which the s i c k woman ( w a s ) s u b j e c t e d ' . From 'The E f f e c t i v e n e s s of Symbols' i n h i s w o r k , S t r u c t u r a l A n t h r o p o l o g y New Y o r k : B a s i c B o o k s , 1 9 6 3 : 1 9 8 . Even m o r e i m p o r t a n t l y , i s h i s s t a t e m e n t i n t h e same a r t i c l e , ' B u t no s u c h t h i n g happens to our s i c k ' (meaning Western p e o p l e s ) 'when the causes o f t h e i r d i s e a s e s have been e x p l a i n e d t o them i n terms o f s e c r e t i o n s , germs or v i r u s e s ' ( i b i d : 1 9 7 ) (My e m p h a s i s a d d e d , a l s o comment in parenthesis).  4.  For a d i s c u s s i o n r e g a r d i n g t h e argument c o n c e r n i n g n e o b e h a v i o u r a l versus experiential/development theories of the a c q u i s i t i o n of moral judgement, see T u r i e l , E., 'The development of concepts of social s t r u c t u r e : s o c i a l c o n v e n t i o n ' i n G l i c k , J . , and C l a r k e - S t e w a r t , K.A., ( e d s . ) , T h e d e v e l o p m e n t o f s o c i a l u n d e r s t a n d i n g New Y o r k : G a r d n e r P r e s s 1978:25-108. T u r i e l ' s work endorses a m o d i f i e d view of P i a g e t ' s interpretation. See P i a g e t , J . , The M o r a l Judgement o f t h e C h i l d , G l e n c o e : F r e e P r e s s 1 9 3 2 , and o f K o h l b e r g ' s i d e a s o f o n t o g e n e s i s . See Kohlberg, I., ' F r o m i s t o o u g h t : how t o commit t h e n a t u r a l i s t i c fallacy and g e t away w i t h i t i n m o r a l d e v e l o p m e n t ' i n M i s c h e l , T . , (ed.) P s y c h o l o g y a n d G e n e t i c E p i s t e m o l o g y New Y o r k : A c a d e m i c P r e s s , 1971.  5.  The i s s u e h e r e h a s t o do w i t h t h e r e l a t i o n s h i p b e t w e e n k n o w l e d g e and social structure. See Mannheim, K., I d e o l o g y and U t o p i a : an i n t r o d u c t i o n t o t h e S o c i o l o g y o f K n o w l e d g e , t r a n s , and e d i t e d b y W i r t h , L., a n d S h i l s , E . , New Y o r k : H a r c o u r t , B r a c e a n d W o r l d , 1 9 3 6 , a n d t h e e n s u i n g d e b a t e i n S t a r k , W., The S o c i o l o g y o f K n o w l e d g e , L o n d o n , R o u t l e d g e and K e g a n P a u l , 1 9 6 7 . Especially chapters 5-8.  96 6.  A shorthand r e f e r e n c e i m p l y i n g a wider d u a l i s m i n thought, e.g. p o s i t i v i s m / e x p e r i e n t i a l i s m , s c i e n t i s m / s u b j e c t i v i t y and problems i n v o l v i n g the n a t u r a l i s t i c f a l l a c y . See B e r t r a n d R u s s e l l v s . G.E. Moore and the R u s s e l l / W h i t e h e a d c o n t r o v e r s y . For an a t t a c k on the n a t u r a l i s t i c f a l l a c y r e g a r d i n g c u l t u r e , see D a v i d Bidney's c r i t i q u e of the ' p o s i t i v i s t i c c u l t u r a l i s t s ' i n h i s T h e o r e t i c a l Anthropology, New York: Schocken Books, 1967:150-153.  7.  As Berger and Luckman p o i n t out i n The S o c i a l C o n s t r u c t i o n o f R e a l i t y (op. c i t ) ' T y p i c a l l y ' ( i n r e i f i c a t i o n ) 'the r e a l r e l a t i o n s h i p between man and h i s world i s r e v e r s e d i n c o n s c i o u s n e s s . Man, the producer o f a world, i s apprehended as i t s product, and human a c t i v i t y as an epiphenomenon o f non-human p r o c e s s ' , (p.89).  8.  The argument can be made that the symbolic i n t e r a c t i o n i s t s ' p o s i t i o n i s f a r too a b s t r a c t and a h i s t o r i c a l . Max Weber's t h e o r y i s embedded i n h i s t o r i c a l events and o r g a n i z a t i o n s : Marx makes the p o i n t that i n s o c i e t y , o n l y those k i n d s of problems are posed which can be s o l v e d , because the c r i t e r i a of i n t e l l i g i b i l i t y are d e f i n e d by c o n c r e t e (class-based) i n t e r e s t s .  9.  Here I would r e f e r to the l a t e n t c o n f l i c t , as Lukes uses the term i n h i s d e s c r i p t i o n o f the more i n s i d i o u s aspect o f power. L a t e n t c o n f l i c t , f o r Lukes, ' c o n s i s t s i n a c o n t r a d i c t i o n between the i n t e r e s t s o f those e x e r c i s i n g power and the r e a l i n t e r e s t s o f those they e x c l u d e ' . Stephen Lukes, 'The Three Dimensional View' i n h i s work Power: A R a d i c a l View, New York: M a c m i l l a n , 1974:24. The q u e s t i o n of r e t r o a c t i v e r e a l i z a t i o n , of c o n s c i o u s n e s s - r a i s i n g , i s of course part o f the p o l i t i c a l h i s t o r i o g r a p h y o f Marx.  10.  In Sarah's case, the f e m i n i s t c r i t i q u e of men's view of women. But a l s o the t r a d i t i o n o f c r i t i c i s m expressed i n the works o f K i r k e g a a r d , N i e t z s c h e , Kafka, Camus and S a r t r e , who a l l d e a l w i t h the environmental r e s t r a i n t s on p e r s o n a l e x p r e s s i o n and s e l f - r e a l i z a t i o n . See H e l l e r , E., The D i s i n h e r i t e d Mind: Harmondsworth: Penguin Books, 1961. For a r e c e n t overview o f the problems a s s o c i a t e d w i t h i n d i v i d u a t i o n as a problem i n p h i l o s o p h i c a