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 AS A CULTURAL A R T I F A C T : AN ETHNOGRAPHY OF THE P O L I T I C S OF S U F F E R I N G b y JOHN SIMON FOULDS B . A . ( H o n s ) , S i m o n F r a s e r U n i v e r s i t y , 1969 M . A . , S i m o n F r a s e r U n i v e r s i t y , 1 971 A T H E S I S SUBMITTED I N P A R T I A L F U L F I L M E N T OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PH I LOSOPHY i n THE F A C U L T Y OF GRADUATE S T U D I E S ( D e p a r t m e n t o f A n t h r o p o l o g y a n d S o c i o l o g y ) We a c c e p t t h i s t h e s i s a s c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE U N I V E R S I T Y OF B R I T I S H COLUMBIA © J . S i m o n F o u l d s , 1984 In p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t o f the requirements f o r an advanced degree a t the U n i v e r s i t y o f B r i t i s h Columbia, I agree t h a t the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and study. I f u r t h e r agree t h a t p e r m i s s i o n f o r e x t e n s i v e copying o f t h i s t h e s i s f o r s c h o l a r l y purposes may be granted by the head o f my department o r by h i s o r her r e p r e s e n t a t i v e s . I t i s understood t h a t copying or p u b l i c a t i o n of t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be allowed without my w r i t t e n p e r m i s s i o n . Department o f 7eU>> The U n i v e r s i t y o f B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 ABSTRACT This thesis i s an a n a l y t i c a l ethnography of the experience of chronic i l l n e s s i n the contemporary setting of a modern Western society. The substantive data i s presented in the form of more or less extended narrative accounts from a number of unrelated i n d i v i d u a l s recounting and r e f l e c t i n g 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 from volunteer informants, in response to a p u b l i c i s e d interest i n contacting informants from within a p a r t i c u l a r l o c a l area who had been diagnosed as s u f f e r i n g from inflammatory bowel disease (IBD). The i n i t i a l focus was limited to t r y i n g to determine how i n d i v i d u a l s reconciled themselves to the biomedical i n t e r p r e t a t i o n of t h e i r condition, which was known to be described as a chronic and sometimes f a t a l syndrome, of uncertain etiology, and for which there was no established cure. The ethnographic material, however, reveals that for some of the informants the f u l l character of t h e i r conditions i s not adequately subsumed by th e i r received medical knowledge. In fact, i t suggests that an appreciation of what i s (or was) wrong with them l i e s much more in the domain of t h e i r handling of the symbolism of selfhood and in t h e i r response to the constraint of s o c i a l authority. For, importantly contained in many of these accounts is evidence that a route to s e l f - h e a l i n g can be found i n the active repudiation of medical knowledge and treatment, and i n the development of a more autonomous mode of self-understanding. This p o s s i b i l i t y stands as the most dramatic implication of the ethnography, and one moreover that has continued to elude many of the informants who go on struggling with t h e i r pathology. The thesis then endeavours to show how and why c u l t u r a l knowledge is deployed so d i f f e r e n t i a l l y among a small c o l l e c t i o n of i n d i v i d u a l s having a p a r t i c u l a r physiopathological d i s t r e s s , as they construct meaningful interpretations of what i s wrong with them. At t h i s l e v e l , they construct that meaning from information gleaned from experience as a patient at the hands of medical and s u r g i c a l p r a c t i t i o n e r s ; from other often long-standing r e l a t i o n s h i p s i n which they frequently tend to view themselves simply as objects of wider s o c i a l conventions and b e l i e f s ; and in some cases from an i n s i s t e n t discord between those contructs and the knowlege that appears to emanate from the s e l f - d e s t r u c t i v e happenings within t h e i r own bodies. The focus here i s on the dominant ideas brought to bear i n r e f l e c t i n g on the meaning of i l l n e s s and the nature of selfhood, e s p e c i a l l y those ideas that concern the symbolism and r h e t o r i c of biomedical versus psychosocial interpretations of i l l n e s s . The systematic e l u c i d a t i o n of the points of linkage between disease progression, and i t s attendant s u r g i c a l interventions, with concurrent events in the d a i l y l i v e s of the informants, stresses, at another l e v e l , the importance of acts of indi v i d u a t i o n and actions that promote self-knowledge. Here the thesis i s concerned primarily with the c r i t i c a l l y d i f f e r e n t ways i n which actions r e f l e c t the r e l a t i o n between a sense of i d e n t i t y and the projections of t h e i r selfhood made by s i g n i f i c a n t others i n t h e i r l i v e s , not excluding medical p r a c t i t i o n e r s themselves. The intertwining of these two le v e l s of experience, i l l u s t r a t e d by reference to the narratives, allows for the development of a theory that i v o f f e r s r e a s o n s why a n d how some i n d i v i d u a l s c o n t i n u e t o b e s i c k , o r e l s e r e c o v e r . I t i s a r g u e d t h a t t h e r e i s a h i s t o r y e m b o d i e d i n t h e i l l n e s s c a r e e r s o f t h e s e i n f o r m a n t s , r e p r e s e n t i n g a f o r m o f l e a r n i n g . T h i s c a n b e s u m m a r i l y d e s c r i b e d a s o n e o f t h e g e n e r a t i o n , m a i n t e n a n c e a n d i d e a l l y e v e n t u a l r e l e a s e f r o m e m o t i o n a l r e s t r a i n t a n d f r o m i n f o r m a l a n d f o r m a l s o c i a l c o n t r o l s . I t i s a r g u e d t h a t t h e same p a t t e r n o f a u t h o r i t a t i v e c o n t r o l i s a t w o r k w h i c h g e n e r a t e s t h e s i c k n e s s a n d a l l o w s f o r t h e a c c e p t a n c e o f i m p e r s o n a l d i a g n o s i s . I t i s a l s o s u g g e s t e d t h a t i t i s t h e p h y s i o l o g i c a l c o n s e q u e n c e s o f t h i s p a t t e r n w h i c h p r o d u c e s t h e s y m p t o m s f o r w h i c h t h e r e m e d y i s s o u g h t . F i n a l l y , a n a r g u m e n t i s made t h a t p r o v i d e s a n e t h n o m e d i c a l a c o u n t i n g f o r t h e e x i s t e n c e o f t h e s y n d r o m e a s a c u l t u r a l ' p r o d u c t 1 , a r a t i o n a l i z a t i o n o f a p a r t i c u l a r way o f t r e a t i n g s y m p t o m s . A n d f o r t h e i n d i v i d u a l s u f f e r e r , t h i s b i o m e d i c a l l o g i c w h i c h c a t e g o r i z e s a n d e x p l a i n s t h e s y n d r o m e , o n c e a c c e p t e d and a c t e d u p o n , r e i n f o r c e s a l r e a d y m a l a d a p t i v e b e h a v i o u r i n o t h e r s e t t i n g s a n d i n h i b i t s t h e l e a r n i n g p r o c e s s , t h u s f u r t h e r r e d u c i n g t h e p o s s i b i l i t y o f r e g a i n i n g h e a l t h . T A B L E OF CONTENTS v A B S T R A C T i i C h a p t e r I I NTRODUCT ION : S c o p e a n d A i m s I n t r o d u c t i o n a n d g e n e r a l a r g u m e n t 2 The p r o d u c t i o n o f a t h e s i s : i n i t i a l q u e s t i o n s 7 Home -made c r i t i q u e s o f h o m e - m a d e b e l i e f s 10 E x l i b r i s : t h e s e a r c h f o r m i s s i n g l i n k s 12 The p r o d u c t i o n o f a t h e s i s c o n t i n u e d : c h o o s i n g and v a l i d a t i n g a m e t h o d o l o g y 15 P a y i n g t h e p r i c e o f c u r i o s i t y 17 T h e a n a l y t i c a l a r g u m e n t a n d t h e p r e s e n t a t i o n o f t h e d a t a 18 F o o t n o t e s t o C h a p t e r I 27 I I A C Q U I R I N G A FORMAL EDUCAT ION 31 I n t r o d u c t i o n 32 The m e d i c a l d e f i n i t i o n o f I BD 33 T h e 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 , p s y c h o l o g i c a l p a t h o g e n e s i s ? 35 The g a s t r o e n t e r o l o g i c a l i n t e r p r e t a t i o n : p s y c h o s o m a t i c e t i o l o g y r e f u t e d ? 38 R e c o n c i l i a t i o n o f p e r s p e c t i v e s : i l l n e s s i s s t r e s s f u l 4 2 C r o h n ' s d i s e a s e : a s e p a r a t e i s s u e ? 44 A w i d e r c o n t e x t : t h e p r o m i s e o f e p i d e m i o l o g y 45 F o o t n o t e s t o C h a p t e r I I 4 9 C h a p t e r v i I I I E S T A B L I S H I N G A METHODOLOGY AND F I N D I N G INFORMANTS 50 I n t r o d u c t i o n 51 T h e o r y a d v i s e s m e t h o d o l o g y 55 T e r m s o f t h e i n t e r v i e w c o n t r a c t 57 I B D i n f o r m a n t s i n a l o c a l c o n t e x t : l o c a l i n f l u e n c e s 58 I B D s u f f e r e r s : i n i t i a l o b s e r v a t i o n s 62 F o o t n o t e s t o C h a p t e r I I I 66 I V MAK ING ANTHROPOLOGICAL SENSE OF A C R U C I A L ACCOUNT 69 A f i e l d w o r k i n t e n t i o n a n d t h e f i r s t i n t e r v i e w 70 " S a r a h " : a c r u c i a l i n f o r m a n t 74 R e f l e c t i o n s o n a n a c c o u n t 83 A d o u b l e - b i n d r e s o l v e d i n t h e r a p y ? 84 I l l n e s s e x p e r i e n c e a n d f o r m a l k n o w l e d g e o f I B D : p o s s i b l e c o n n e c t i o n s 86 D i s c a r d i n g d i a g n o s i s : t h e p e r s o n a l i z i n g p r o c e s s 87 The a n a l y t i c a l v a l u e o f t h e c o n v e r s i o n p h e n o m e n o n 88 C o n v e r s i o n , s o c i a l c o n t e x t s , m o r a l r u l e s and a x i o m s o f t h o u g h t 89 R e f l e x i v i t y , r e i f i c a t i o n a n d IBD a s a c u l t u r a l a r t i f a c t 91 F o o t n o t e s t o C h a p t e r I V 95 C h a p t e r v i i V THE NATURAL H I S T O R Y OF S U F F E R I N G 1 . CONVERSION AND I T S R A M I F I C A T I O N S 97 I n t r o d u c t i o n 98 The c o n v e r t e d . P u t t i n g i l l n e s s b e h i n d t h e m 100 E m o t i o n a l i t y , p e r s o n a l i t y a n d s o c i a l o r g a n i z a t i o n : t h e b a s i s f o r a t h e o r y 148 F o o t n o t e s t o C h a p t e r V 158 V I THE NATURAL H I S T O R Y OF S U F F E R I N G 2 . V A C I L L A T I O N AND L I M I N A L I T Y 159 F o o t n o t e s t o C h a p t e r V I 212 V I I THE NATURAL H I S T O R Y OF S U F F E R I N G 3 . S E L F , S O C I A L S E L F AND THE BODY 213 F o o t n o t e s t o C h a p t e r V I I 287 V I I I CONCLUSIONS 288 I l l n e s s a s l e a r n i n g 291 E m o t i o n a l i t y and S e l f h o o d 296 S o c i a l c o n t e x t s a n d S e l f h o o d 297 S e l f h o o d a n d t h e m e d i c a l c o n t e x t 302 U n f i n i s h e d b u s i n e s s 1 : e p i d e m i o l o g y 307 U n f i n i s h e d b u s i n e s s 2 : P s y c h i a t r y a n d p s y c h o p a t h o l o g y 310 U n f i n i s h e d b u s i n e s s 3 : t h e c o r p o r e a l p r o b l e m 311 U n f i n i s h e d b u s i n e s s 4 : c o n v e n t i o n a l f o r m s o f t r e a t m e n t 3 1 2 C a v e a t s a n d o t h e r p o s s i b l e i n t e r p r e t a t i o n s 3 1 3 F o o t n o t e s t o C h a p t e r V I I I 317 B I B L I O G R A P H Y A P P E N D I C E S : A p p e n d i x i I n t r o d u c t o r y l e t t e r t o p r o s p e c t i v e i n f o r m a n t s , l e t t e r o f c o n s e n t , a d v e r t i s e m e n t f o r i n f o r m a n t s . A p p e n d i x i i P o r t r a y a l s o f I BD i n m a s s c o m m u n i c a t i o n : some e x a m p l e s f r o m i n t e r -n a t i o n a l a n d l o c a l p r i n t m e d i a . A p p e n d i x i i i V i t a l s t a t i s t i c s c o n c e r n i n g c o n c e r n i n g h o s p i t a l i z a t i o n o f r e l a t e d c a s e s i n B r i t i s h C o l u m b i a : c o m m u n i c a t i o n f r o m t h e P r o v i n c i a l M i n i s t r y o f H e a l t h i x ACKNOWLEDGEMENTS I w o u l d l i k e t o t h a n k my i n f o r m a n t s f o r p r o v i d i n g me t h e i r t i m e , p a t i e n c e a n d t r u s t . I h o p e t h a t t h e y w i l l n o t b e t o o d i s a p p o i n t e d w i t h my c o n c l u s i o n s r e g a r d i n g t h e q u e s t i o n t h e y a l l a s k e d me , w h i c h was t o d o w i t h t h e b u s i n e s s o f m a k i n g s e n s e o f s u f f e r i n g . I t i s a l s o c l e a r t o me t h a t I owe a d e b t o f l o n g s t a n d i n g t o t h o s e who s h o w e d me t h e e x c i t i n g p r o m i s e o f a n t h r o p o l o g y a n d p a r t i c u l a r l y t o P r o f e s s o r D a v i d B e t t i s o n , who wa s t e a c h i n g a t S i m o n F r a s e r U n i v e r s i t y i n t h e y e a r s w h e n I wa s a s t u d e n t t h e r e . W i t h r e s p e c t t o t h e p r o d u c t i o n o f t h i s p a r t i c u l a r p i e c e o f w o r k , I w o u l d l i k e t o a c k n o w l e d g e t h e e n c o u r a g e m e n t a n d c r i t i c i s m a f f o r d e d me b y my f r i e n d a n d c o l l e a g u e T e r r y M c C a n n . I w o u l d a l s o l i k e t o t h a n k a l l t h o s e who w e r e w i l l i n g t o t o l e r a t e my p r e o c c u p a t i o n w i t h t h e s u b j e c t m a t t e r o f t h i s t h e s i s , i n g e n e r a l c o n v e r s a t i o n a n d i n m o r e f o c u s s e d d i s c u s s i o n o f ' m a t t e r s a n t h r o p o l o g i c a l ' . My t h a n k s a r e a l s o d u e t o my c o m m i t t e e membe r s P r o f e s s o r s E l v i W h i t t a k e r , M a r i e - F r a n c o i s e G u e d o n and H e l g a J a c o b s o n , a n d t o o t h e r membe r s o f t h e d e p a r t m e n t who a s s i s t e d me i n my a t t e m p t s t o u n d e r s t a n d o t h e r p e o p l e ' s s t r u g g l e s t o make s e n s e o f w h a t t o o o f t e n a p p e a r s t o b e a b i z a r r e , c o n f u s i n g a n d a l i e n a t i n g w o r l d o f c o m m u n i c a t i o n i n m o d e r n c o n t e m p o r a r y W e s t e r n s o c i e t y . 1 CHAPTER I I n t r o d u c t i o n : S c o p e a n d A i m s " 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 t h e 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 o u r s e n s e s , i s u n d e r s t o o d o n l y i n t h e f o r m 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 a s s e n s u o u s human a c t i v i t y , a s p r a c t i c e ; n o t s u b j e c t i v e l y . K a r l M a r x , T h e s e s o n F e u e r b a c h , The G e r m a n I d e o l o g y 2 I n t r o d u c t i o n and g e n e r a l argument T h i s t h e s i s i s a s t u d y , i n a s p e c i f i c c u l t u r a l c o n t e x t , o f the ways i n wh i ch i n d i v i d u a l s a t t a c h meaning to the s u f f e r a n c e o f t h e i r i l l n e s s . I t i s a l s o a s tudy o f the m e d i c a l know ledge , p e c u l i a r to t h a t c u l t u r e , wh i ch i s b r o u g h t t o b e a r on the u n d e r s t a n d i n g and t r ea tmen t o f c h r o n i c i l l n e s s . T h i s knowledge a c t u a l l y i g n o r e s and o b s c u r e s impor t an t d i m e n s i o n s o f t ha t s u f f e r i n g because o f adherence to p a r t i a l and l i m i t e d d e f i n i t i o n s o f human n a t u r e . The i l l n e s s i n q u e s t i o n i s known as i n f l a m m a t o r y bowel d i s e a s e and the c u l t u r a l c o n t e x t i n wh ich t h i s i n v e s t i g a t i o n took p l a c e i s the modern u rban s o c i e t y o f the Lower M a i n l a n d o f B r i t i s h C o l u m b i a . My p r i n c i p a l i n f o r m a n t s a re E n g l i s h - s p e a k i n g men and women o f Eu ropean and C a n a d i a n b a c k g r o u n d s , who l i v e and work i n t h a t m e t r o p o l i t a n e n v i r o n m e n t . In many ways , t h i s i s a p i e c e o f work wh ich can be c o n s i d e r e d as an example o f an a n t h r o p o l o g i s t ' s t u d y i n g u p ' i n h i s own s o c i e t y , s p e c i f i c a l l y i n the sense o f making an at tempt to unde r s t and why good h e a l t h i s d e n i e d t o a c e r t a i n group o f p e o p l e and how the i n s t i t u t i o n a l s t r u c t u r e o f m e d i c a l thought and p r a c t i c e a s s i s t s , o r more l i k e l y f a i l s to a s s i s t i n the r e l i e f o f t h i s s p e c i f i c form o f s u f f e r i n g . 1 My i n t e r e s t i n c o n s i d e r i n g the r e s e a r c h wh i ch e v e n t u a l l y l e d to t h i s d i s s e r t a t i o n was s i m p l y to t r y and u n r a v e l a c h a l l e n g i n g p rob l em r e p r e s e n t e d by the e x i s t e n c e o f a p a r t i c u l a r c h r o n i c i l l n e s s i n my own s o c i e t y , f o r wh i ch t h e r e was s a i d to be no known m e d i c a l s o l u t i o n . I t became an i n v e s t i g a t i o n which took me, f i r s t o f a l l , on a s e a r c h i n t o the b i o m e d i c a l , 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 l i t e r a t u r e wh i ch d e a l s w i t h the phenomenon o f i n f l a m m a t o r y bowel d i s e a s e as a p a t h o l o g y o c c u r r i n g w i t h i n Wes te rn s o c i e t i e s . But more 3 importantly, i t became a search which brought me eventually into contact with the sufferers themselves, from whom I was able to e l i c i t accounts and testimonies of experience gained as patients. In the narratives of these i n d i v i d u a l s , I suggest that there i s important evidence to show that the condition known as inflammatory bowel disease i s not simply what a l l my informants have been led to believe i t was, namely a biophysical aberration of mysterious o r i g i n s . Rather, i t can be viewed as a highly complex syndrome in which physio-pathological symptoms form only a part of the o v e r a l l condition, the roots of which are to be found in the i n t e r p r e t a t i o n and organization of life-experiences, which in turn mirror fundamental values and strategies regarding selfhood, s o c i a l r e l a t i o n s h i p s and s o c i a l organization in the culture i n which these informants l i v e and work. At the centre of the interpreted world of my informants l i e s what i s c l e a r l y a mechanistic and authoritarian view of the obligations of the s e l f to the moral demands of others, i n v a r i a b l y giving r i s e to an e f f o r t , of d i f f e r e n t degree of commitment and success, to fin d reasons why those obligations should not be met. This r e f l e x i v e struggle, which i s c a r r i e d on in highly private and often secretive ways, i s , I suggest, by far the most important component of the i l l n e s s syndrome, and one that i s missed almost e n t i r e l y in the practice of diagnosis and treatment. It is because of the importance which I attach to making the content, construction and organization of t h i s seemingly private world of personal meaning e x p l i c i t , that I decided to o f f e r my informants' accounts i n l a r g e l y unedited form, rather than condense or fragment them to suit the purposes of a more highly elaborated deductive model of analysis. 4 For ease of exposition i n making sense of these narratives, or i l l n e s s careers,^ and in order to make a central point of argument concerning them, I group them as examples to f i t a t r i p a r t i t e model of consciousness and physical status. My argument i s that the morbid symptoms of the physical manifestations of inflammatory bowel disease are correlated d i r e c t l y with the success or f a i l u r e of the i n d i v i d u a l to overcome the i n s i s t e n t demands of others that he/she conform to r i g i d performances of s o c i a l r o l e s , found mostly within the domains of kinship, marriage and courtship. Taken together, these accounts of i l l n e s s careers can be seen as a kind of progress in the structuring of selfhood, i n the face of subversive processes stemming from both within and without the ego.^ I take the po s i t i o n that through symbolic actions and r e f l e x i v e e f f o r t , selfhood i s continuously created and established, and i n terms of my informants' l i v e s t h i s process involves a s p e c i f i c preoccupation as to the extent to which the claims made by s i g n i f i c a n t others to have power and authority over the i n d i v i d u a l should be afforded legitimacy, and therefore be acceded to or denied. I suggest then, that 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 experiences i n dealing with authority. I further suggest that these experiences are linked to the sufferance and re s o l u t i o n of i l l n e s s i n terms of physical symptomatology, although the l a t t e r factor i s complicated somewhat by the sur g i c a l removal of c e r t a i n offending parts of the in d i v i d u a l ' s anatomy. The natural h i s t o r y of the symptomatology i s best understood as involving a series of f a i r l y d i s c r e t e stages, each characterized by the occupancy of one of three types of ex p e r i e n t i a l states described i n my model. The f i r s t state or category i s exemplified by those i n d i v i d u a l s who 5 have addressed themselves d i r e c t l y to the structuring of selfhood i n the i r l i v e s and who have found i t an appropriate route to health to make dramatic and far-reaching changes i n consciousness, which I t y p i f y as 'conversion'. The second state or category includes those i n d i v i d u a l s who continue to be quite i l l , who spontaneously point to the problems associated with making fundamental changes to t h e i r consciousness, but who do not yet seem able to fin d the means to do so. The t h i r d category contains those i n d i v i d u a l s , some of whom are ch r o n i c a l l y i l l and some of whom have received r a d i c a l surgery which appeases t h e i r physiopathology, who are severely troubled by present and past events i n t h e i r l i v e s , but seem quite unable to resolve them. Now what these states of consciousness and t h e i r a c q u i s i t i o n means in terms of health or i l l n e s s i s a c r u c i a l issue i n t h i s t h e s i s . It would seem, from the accounts of su f f e r i n g which my informants o f f e r , that the construction of a p a r t i c u l a r kind of selfhood, or the f a i l u r e to do so, provides a fundamentally important key to unlock the cage of su f f e r i n g , in that i t might well begin to explain not only the genesis of physiopathology, but o f f e r reasons for i t s perpetuation and ultimate r e s o l u t i o n . It was the hope of est a b l i s h i n g an insight of th i s kind which f i r s t prompted me to pursue my research and one which I consider to be just as important i n i t s p r a c t i c a l ramifications as i t i s a problematical issue to be addressed, r i g h t f u l l y , I would maintain, from an anthropological point of view. Nevertheless, the questions which can be raised about the proper anthropological treatment of these l i f e experiences are fasc i n a t i n g and demand attention. Paramount among these questions, in my opinion, i s the matter of the di s j u n c t i o n between biomedical knowledge and the knowledge to be gained i n the experience of c u l t u r a l l i f e . This i n turn has to be coupled with the problem of t r y i n g to explain why many of my informants choose to c l i n g to a biomedical explanation of t h e i r s u f f e r i n g i n terms of seeing i t as a mysterious disease, rather than doing what other informants do, which i s to discard the disease-model of t h e i r i l l n e s s and repudiate i t i n favour of a psycho- and sociosomatic model, which i n turn seems to o f f e r a methodology of s e l f - h e a l i n g . Again, and in terms of the posture of medical p r a c t i t i o n e r s and surgeons, how i s i t possible to account for the almost t o t a l lack of concern f o r , or attention to the wider world of l i v e d experience i n which patients-as-complainants l i v e and work, a viewpoint which i s revealed in the accounts of doctor- and surgeon-patient r e l a t i o n s h i p s offered by my informants? What can be said about the epidemiological pattern of s u s c e p t i b i l i t y to inflammatory bowel disease, in that there i s evidence to show that some categories of person are more at r i s k than others? I f i t i s possible to claim that bodily pathology i s a correlate of unsuccessful attempts to put apposite symbolic constructs of selfhood into p r a c t i c e , then what can be said about the 'prophylactic' or 'therapeutic' s e l f as an adaptive mechanism i n a modern c u l t u r a l context? F i n a l l y , what broad circumstances are there, 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 to t h i s process? To many of these questions I can o f f e r only a p a r t i a l answer, but I do endeavour to deal with them as far as possible within the l i m i t s of t h i s d i s s e r t a t i o n . It must be said that i n many ways, my informants reveal d i r e c t l y , or i n d i r e c t l y , how to go about answering these questions. They have the expertise, as members of t h e i r culture, to theorize about t h e i r 7 c i r c u m s t a n c e s : i n many c a s e s t h e y o f f e r h i g h l y s o p h i s t i c a t e d n o t i o n s t o a c c o u n t f o r t h e d i s c r e p a n c i e s , d i s j u n c t i o n s a n d a b s u r d i t i e s w h i c h l i n k t h e s u f f e r i n g a n d t r e a t m e n t o f i l l n e s s t o t h e p r o c e s s o f e n c u l t u r a t i o n a n d t h e s o c i a l i n s t i t u t i o n s w h i c h t h e y l i v e t h r o u g h . I s e e my f u n c t i o n , a s a n a n t h r o p o l o g i s t , t o t r y a n d b r i n g t h e i r i n d i v i d u a l a c c o u n t s t o g e t h e r t o p r o d u c e my own a c c o u n t o f h o w , i n g e n e r a l , t h e s e p e o p l e w i t h s o many common e x p e r i e n c e s a c t u a l l y r e p r e s e n t t h e m s e l v e s t o t h e m s e l v e s a n d t o o t h e r p e o p l e . I n o t h e r w o r d s , i n p o i n t i n g t o t h e f r e q u e n c y w i t h w h i c h p a r t i c u l a r w a y s o f v i e w i n g t h e w o r l d o c c u r s among i n d i v i d u a l s who do n o t k n o w e a c h o t h e r a n d t h e means b y w h i c h t h e y go a b o u t d e a l i n g w i t h t h e i r i l l n e s s a n d t h e i r l i v e s , my a n t h r o p o l o g i c a l c o n t r i b u t i o n i s t o t r y t o p e r f o r m t h e t r i c k w h i c h G e e r t z ( 1 9 8 3 : 6 0 ) s u g g e s t s r a t h e r f a c e t i o u s l y i s w h a t a n t h r o p o l o g i s t s s h o u l d p e r f o r m , ' t o f i g u r e o u t w h a t t h e d e v i l ( p e o p l e ) t h i n k t h e y a r e up t o ' . B e y o n d t h a t , and a t t h i s l e v e l d r a w i n g u p o n w i d e r s o c i o l o g i c a l k n o w l e d g e , I a t t e m p t t o f i n d w a y s i n w h i c h t h e i r a c t i o n s a n d b e l i e f s c a n b e r e l a t e d t o t h e o r i e s o f s o c i a l o r g a n i z a t i o n a n d s o c i a l c h a n g e . I a l s o w a n t t o d r a w a t t e n t i o n t o t h e w a y s i n w h i c h i n f l a m m a t o r y b o w e l d i s e a s e i s p o r t r a y e d i n p o p u l a r c u l t u r e and t h e m e d i a w h i c h c o n t r i b u t e s t o t h a t c u l t u r e . B u t m o s t o f a l l , i n a n e f f o r t w h i c h c o u l d f e a s i b l y b e c o n s i d e r e d a s a n e n t e r p r i s e i n t h e s o c i o l o g y o f k n o w l e d g e , I w a n t t o b e g i n a d e b a t e a b o u t i n f l a m m a t o r y b o w e l d i s e a s e w h i c h h a s , a s a f i r s t p r e m i s e , t h a t i t i s a n a r t i f a c t a n d a p r o c e s s , p r o d u c e d i n and g e n e r a t e d b y t h e l i f e - s t y l e o f a m o d e r n s o c i e t y . T h e p r o d u c t i o n o f a t h e s i s : i n i t i a l q u e s t i o n s I b e c a m e c u r i o u s , some y e a r s a g o , a s t o t h e n a t u r e o f two r e l a t e d f o r m s o f i l l n e s s w h i c h a f f e c t t h e i n t e s t i n e s a n d w h i c h b r i n g v a r y i n g d e g r e e s o f 8 p a i n a n d m i s e r y t o t h e s u f f e r e r , and u s u a l l y i n t h e f o r m o f u n c o n t r o l l a b l e d i a r r h o e a . T h e r e s e emed t o b e , a t t h a t t i m e , a n i n c r e a s i n g l y l a r g e n u m b e r o f p e o p l e whom I k n e w , o r k n e w a b o u t , who w e r e s u f f e r i n g f r o m t h e s e i l l n e s s e s w h i c h t h e y r e f e r r e d t o a s ' u l c e r a t i v e c o l i t i s ' o r ' C r o h n ' s d i s e a s e ' , b o t h o f w h i c h f a l l u n d e r t h e g e n e r a l d i a g n o s t i c l a b e l o f ' i n f l a m m a t o r y b o w e l d i s e a s e 1 ( I B D ) . ^ Some o f t h e d i s t i n c t i v e f e a t u r e s o f t h e s e i l l n e s s e s w e r e p a r t i c u l a r l y d i s t u r b i n g t o t h e s e p e o p l e , a p a r t f r o m t h e b a s i c f a c t s o f e x p e r i e n c e d i l l - h e a l t h . The b i o m e d i c a l d e f i n i t i o n o f t h e i r c i r c u m s t a n c e s , d e n o t e d b y t h e d i a g n o s t i c c a t e g o r i e s o f f e r e d b y v a r i o u s p h y s i c i a n s and s p e c i a l i s t s , was t h a t t h e o r g a n i c d y s f u n c t i o n s c o u l d n o t b e a t t r i b u t e d t o a n y k n o w n c a u s e . I n t h i s s e n s e , a l t h o u g h t h e s y m p t o m s w e r e r e c o g n i z a b l y f a m i l i a r , a n d t h e p a t t e r n o f p h y s i c a l d i s t r e s s e x h i b i t e d t y p i c a l f e a t u r e s , t h e c a u s e s w e r e a c k n o w l e d g e d t o b e m y s t e r i o u s a n d t h e r e wa s n o c o u r s e o f t r e a t m e n t w h i c h c o u l d p r o m i s e a c u r e . What was w r o n g , a c c o r d i n g t o t h e t h e o r y o f m e a n i n g o f f e r e d b y t h e b i o m e d i c a l e x p l a n a t i o n , w a s t h a t t h e b o d y was d o i n g s o m e t h i n g i n i m i c a l t o i t s own p r o p e r f u n c t i o n i n g . P a t i e n t s a p p e a r e d t o b e a s s u r e d t h a t t h e b e s t i n t e r p r e t a t i o n o f w h a t w a s h a p p e n i n g t o t h e m wa s c o n t a i n e d i n t h e v o c a b u l a r y o f t h e d i a g n o s t i c c a t e g o r y , w h i c h i t s e l f wa s a s u m m a t i o n o f t h e d e s c r i p t i o n o f t h e p h y s i o p a t h o l o g i c a l p r o c e s s e s w h i c h w e r e a t w o r k . Now a l t h o u g h i t s eemed t o me t h a t t h i s a r g u m e n t was c l e a r l y t a u t o l o g i c a l , a l l my i n i t i a l a t t e m p t s t o b r e a k o u t o f t h e c i r c u l a r i t y o f t h e e x p l a n a t i o n , t o f i n d some l i n k s w i t h t h e m o r e g e n e r a l r e a l m o f human e x p e r i e n c e , d i d n o t s e e m t o p r o m i s e v e r y m u c h , p a r t i c u l a r l y w h e n I r e s t r i c t e d m y s e l f t o t h e a v a i l a b l e l i t e r a t u r e o n t h e s u b j e c t . To move away f r o m t h e b i o m e d i c a l a n d b i o l o g i c a l paradigm, or to find a route out of i t which might lead to the establishment of some broader determinants of occurrence, or even throw some l i g h t on the question of s u s c e p t i b i l i t y , always seemed to lead into some swamp of unsupportable conjecture, where c r i t i c a l elements of d i r e c t i n g information were missing. To extend the metaphor, there was always some comfort to be found i n returning to the dry land of b i o l o g i c a l p o s i t i v i s m and accept the undeniable f a c t i c i t y of a f a u l t y metabolism, of tissue f a i l i n g under stress. 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 to be almost c e r t a i n l y a masquerade, d e f i c i e n t i n logic and unrelated to the basic facts of human l i f e and adaptation. No event in nature i s unconnected to other events in nature. What pretends to be an explicandum, i n the form of the biomedical diagnosis, seemed more and more to be an explicans. Inflammatory bowel disease began to acquire the status of a phantom, which I f e l t had to be demystified. I suspected that i t was no more than a label to r a t i o n a l i z e and v a l i d a t e a p a r t i c u l a r mode of treatment. It was at t h i s point, which occurred roughly at the same time as I was developing an interest i n medical anthropology, that I f e l t I should attempt an i n v e s t i g a t i o n of a problem existing i n my own culture as i f I were undertaking an ethnography in some less f a m i l i a r context, where the anthropologist i s made aware of the virtues of adopting a form of innocence and therefore becomes more open to the p o s s i b i l i t y of acquiring r a d i c a l l y new knowledge. By innocence, I do not mean to imply naivete. Rather, i t involves a conscious e f f o r t to suspend, or place brackets around the established 'natural at t i t u d e ' of everyday l i f e . ^ This i s what I was prepared to do as part of my i n v e s t i g a t i v e strategy. At the same time, however, t h i s 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 findings i n a growing body of s c h o l a r l y and popular l i t e r a t u r e where the argument i s made that i l l n e s s and diagnosis are constructs shaped d i f f e r e n t i a l l y i n terms of p a r t i c u l a r h i s t o r i c a l and c u l t u r a l contexts. Home-made c r i t i q u e s of home-made b e l i e f s In the philosophy of medicine, i n the sociology of health and i l l n e s s and in the more recently developed f i e l d of anthropology known as ethnomedicine, i t i s possible to fin d r e l a t i v i s t i c and c r i t i c a l i n t e r p r e t a t i o n s of Western medical b e l i e f s and p r a c t i c e s , which bring into sharp focus the h i s t o r i c a l and c u l t u r a l roots of biomedical and p s y c h i a t r i c knowledge, revealing that those most fundamental axioms of c l i n i c a l judgement are i d e a t i o n a l constructs, and, as such, are not only and simply approximations of r e a l i t y , but are connected to other more basic protocols of thought and action i n the c u l t u r a l context in which they are advanced and promoted.^ When put into p r a c t i c e , biomedical thought i s no d i f f e r e n t from any other forms of human a c t i v i t y , i n the sense that i t must oblige the actor to j u s t i f y the action i n terms of meaningful r a t i o n a l i z a t i o n s which derive t h e i r force from accepted values beyond the circumscribed realm of ideas which advise the purposes of a p a r t i c u l a r act. I f the dependence of an i l l person on a healer's knowledge is not related to anything else apart from the prospect of regaining health, i t i s nevertheless a r e l a t i o n s h i p based on the t a c i t understanding of the healer's claim to some au t h o r i t a t i v e knowledge. It i s one of the hallmarks of Western biomedical b e l i e f and practice that diagnostic interpretations of i l l - h e a l t h should proceed through the linkage of a patient's condition to a disease-category, through the assessment of symptoms as d i s t i n c t i v e features. Within the nosology of the biomedical belief-system, there i s also to be found a preponderance of diagnostic categories which place b i o l o g i c a l phenomena at the forefront of the i n t e r p r e t i v e process. The nomenclature of the taxonomic structure, i n turn, i s a nomencalature of pathological anatomy and metabolism. As many writers have argued, one of the major paradoxes in modern biomedical practice i s the elevation of diagnostic categories to the status of things, 'disease e n t i t i e s ' , and t h i s tendency to r e i f i c a t i o n i s r e f l e c t e d i n the emphasis given to the healing art as the treatment and prevention of disease, rather than with the contingent circumstances of an i n d i v i d u a l ' s experience of s u f f e r i n g . ^ what f a l l s outside the parameters of organic pathology, i n the meaning established by diagnosis, can often be dismissed as a subsidiary phenomenon. This, one can r e f e r to generally as ' i l l n e s s ' , which in medical terms can take second place in importance to the more legitimate meaning of pathology communicated through reference to established disease-categories. What ' i l l n e s s ' i s , of course, begs a number of questions.^ But whatever ' i l l n e s s ' may be, the d e f i n i t i o n s of a sick person as 'diseased' i s not l i k e l y to exhaust the e x i s t e n t i a l and e x p e r i e n t i a l dimensions of what i t means to be a person-with-a-disease. My in t e r e s t i n i n v e s t i g a t i n g the circumstances of s u f f e r i n g inflammatory bowel disease was prompted simply by my c u r i o s i t y as to what these ' i l l n e s s ' circumstances might be and how the received information given to people e x h i b i t i n g the 'symptoms' of 'inflammatory bowel disease' influenced them i n deciding and accepting what i t was that was wrong with them. 12 E x l i b r i s : t h e s e a r c h f o r m i s s i n g l i n k s B e f o r e s e t t i n g o u t t o i n t e r v i e w a n y s u f f e r i n g s u b j e c t s , I b e g a n a s e a r c h t h r o u g h t h e l i t e r a t u r e t o a u g m e n t my own b i o m e d i c a l a n d s u r g i c a l k n o w l e d g e o f i n f l a m m a t o r y b o w e l d i s e a s e a n d f o r o t h e r i n f o r m a t i o n a b o u t t h e p a t h o l o g y w h i c h s e e m e d r e l e v a n t t o my e n t e r p r i s e . A l t h o u g h t h i s wa s a s e a r c h w h i c h c o n t i n u e d d u r i n g t h e p e r i o d i n w h i c h I wa s i n t e r v i e w i n g my i n f o r m a n t s , I h a d a c q u i r e d a g o o d d e a l o f k n o w l e d g e a b o u t t h e c o n c e p t u a l i z a t i o n a n d t r e a t m e n t o f t h e s y n d r o m e p r i o r t o t h e t i m e w h e n t h o s e i n t e r v i e w s b e g a n . I n t h a t s e a r c h I wa s o n t h e l o o k o u t f o r a v e n u e s w h i c h m i g h t h a v e b e e n e x p l o r e d b y o t h e r r e s e a r c h e r s o r p r a c t i t i o n e r s w h i c h h a d t a k e n t h e m away f r o m t h e p r e d o m i n a n t l y b i o p h y s i c a l c h a r a c t e r i z a t i o n o f t h e p a t h o l o g y w i t h w h i c h I was m o s t f a m i l i a r . T h e r e s u l t s o f t h a t s e a r c h w e r e s i g n i f i c a n t i n t w o w a y s . F i r s t , i t a d d e d t o my c o n v i c t i o n t h a t a n e t h n o g r a p h i c s t u d y w h i c h made l i f e e x p e r i e n c e s o f p a t i e n t s a p r i m e f o c u s was e s s e n t i a l , i f some o f t h e m i s s i n g p i e c e s o f t h e p u z z l e w e r e t o be f o u n d . S e c o n d l y , a n d t h i s o n l y a f t e r I b e g a n my i n t e r v i e w s , t h e r e wa s a v e r y c l o s e c o r r e s p o n d e n c e b e t w e e n a p a r t i c u l a r m o d e l o f i n f l a m m a t o r y b o w e l d i s e a s e w h i c h I g l e a n e d f r o m my r e a d i n g a n d t h e one u p o n w h i c h my i n f o r m a n t s ' u n d e r s t a n d i n g a n d a c c e p t a n c e o f t h e i r c i r c u m s t a n c e s wa s b a s e d . T h i s m o d e l I r e f e r t o a s t h e 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 o n e . T h e r e w e r e i m p o r t a n t e x c e p t i o n s t o t h i s c o n s t r u c t i o n a s b e i n g c o m p l e t e l y a d e q u a t e f r o m t h e s t a n d p o i n t o f some a u t h o r s , who r e c o m m e n d t h e c o n s i d e r a t i o n o f t h e p o s s i b l e t h e r a p e u t i c v a l u e o f p s y c h o a n a l y t i c a l o r p s y c h i a t r i c i n t e r p r e t a t i o n s . H o w e v e r , o n l y o n e o f my i n f o r m a n t s r e c e i v e d , a n d a c c e p t e d t h a t c o n s t r u c t i o n o f h e r ' d i s e a s e ' , a l t h o u g h o t h e r s came t o a p p r o x i m a t e t h a t f o r m o f a n a l y s i s , w h i c h t h e y 13 developed as part of a programme of s e l f - h e l p on t h e i r own i n i t i a t i v e . As I s h a l l i l l u s t r a t e i n the presentation of the experiences of those informants who seem either to have recovered from t h e i r physical a f f l i c t i o n s , or for whom those a f f l i c t i o n s are minimized, attention to t h e i r cognitive and perceptual habits, i n a r e f l e x i v e l y c r i t i c a l way, pays dividends which are largely denied to those informants whose focus i s directed to t h e i r physiopathology, or to the gastroenterological i n t e r p r e t a t i o n of th e i r physiopathology as such. As I suggest, from my examination of the l i t e r a t u r e , the opinion of the medical f r a t e r n i t y as to how to go about dealing with inflammatory bowel disease as a syndrome i s divided roughly into 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 ce r t a i n reservations which I do not wish to pursue here, there 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 protocol of treatment than the regimen based on medication and surgery, p a r t i c u l a r l y i n the i n i t i a l phases of i l l n e s s . In reading about the apparent controversy between these two camps, and the interpretations made by p s y c h i a t r i s t s as to what might be 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 disease patients, I was introduced to a somewhat more f a m i l i a r version of what an anthropologist would recognize as a human being, that i s , of an inhabited body, and of some recognizable i f perhaps d i s t o r t e d and p a r t i a l pictures of patients' consciousness at work. This aspect, I would suggest, i s almost e n t i r e l y missing 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 perspective, which I present early i n the next chapter. Also from the synoptic portrayals of second-hand accounts of patients' behaviours and attitudes i n those p s y c h i a t r i c 14 i n t e r p r e t a t i o n s , i t i s possible to glimpse a view of animated subjects, of i l l persons l i v i n g s o c i a l l i v e s . By comparison with the s t r i c t l y biomedical and c l i n i c a l model, which addresses i t s e l f to the anonymous subject, or nothing but the unknown bearer of a form of physiopathology, the p s y c h i a t r i c accounts are a step closer to our common sense understanding of persons, although s t i l l represented to us as bearers of forms, drawn mostly from the taxonomy of p s y c h i a t r i c pathology. With the addition of epidemiological information i n the l i t e r a t u r e , there i s offered the promise of coming even closer to an understanding of what might l i e behind the formal biomedical and p s y c h i a t r i c models, i n that i t implies patterns of s u s c e p t i b i l i t y based upon such factors as gender, age, ethnic membership and r e l i g i o u s a f f i l i a t i o n . This information not only reveals some i n t e r e s t i n g links between the practice of epidemiology and anthropology, but also immediately and dramatically raises some far-reaching questions. Not the least of these i s how or why c e r t a i n kinds of b e l i e f , forms of s o c i a l organization or action might be connected to the incidence of inflammatory bowel disease. Any epidemiological data implies s u s c e p t i b i l i t y , may point to a s o c i a l theory of causation of pathology, and by extension therefore also i s suggestive of the converse, i . e . a theory of prophylaxis. But again, such speculation on my part I found to be limited by the ways in which information about subjects was constrained by the c a t e g o r i c a l indices of epidemiological methodology. In the end, a l l three types of accounting, 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 the epidemiological models proved to be inadequate because they were circumscribed by boundary assumptions which I considered i n j u s t i f i a b l e . 15 The production of a thesis continued: choosing and v a l i d a t i n g a methodology. The task therefore which seemed to present i t s e l f to me as a consequence of reading the l i t e r a t u r e was to try to incorporate those dimensions of experience which go beyond the characterizations of what was implied by the biomedical, p s y c h i a t r i c and epidemiological data i n reference to a person-with-a-disease. In t h i s enterprise I was hoping to accomplish some sort of re s o l u t i o n to two questions, both of which i t seemed would be best answered only through obtaining d e t a i l e d information based on an informant's disclosure of the contents of consciousness and processes of r e f l e x i v i t y . The f i r s t question had to do with the meaning of i l l n e s s from the point of view of the knowing and experiencing subject. I was curious to know how an in d i v i d u a l who had been i d e n t i f i e d as su f f e r i n g inflammatory bowel disease would make sense, adjudicate, and v a l i d a t e the type and character of medical, s u r g i c a l or p s y c h i a t r i c intervention i n which he/she had p a r t i c i p a t e d . To what degree did they f i n d such intervention appropriate i n dealing with t h e i r symptoms? What aspects of su f f e r i n g were not addressed i n such intervention and how was t h i s reconciled, or rationalized? Did the intervention bring about p o s i t i v e or therapeutic changes? What kind of expectations, hopes or fears did an informant exhibit regarding the nature of i l l n e s s , and to what extent were those hopes and fears established i n the discourse between the patient and the c l i n i c i a n or surgeon? To what extent did an informant accept the authority of the diagnostician, and, i f appropriate, the implications and ramifications of the disease-model of i l l n e s s ? This general question i s the most immediate and pressing since i t deals d i r e c t l y with what marks these sufferers o f f from other people. But c l e a r l y 16 t h i s q u e s t i o n i s n o t u n r e l a t e d t o t h e m o r e g e n e r a l i s s u e o f h o w t o make s e n s e o f t h i s p e r i o d i n a u t o b i o g r a p h y , w h i c h w i l l i n c l u d e many m o r e s o c i a l r e l a t i o n s h i p s t h a n t h o s e e s t a b l i s h e d w i t h m e d i c a l p e r s o n n e l . T he o t h e r g e n e r a l q u e s t i o n , t h e r e f o r e , a g a i n a r i s i n g p a r t l y f r o m t h e l i t e r a t u r e , h a d t o d o w i t h t h e w a y s i n w h i c h i n f o r m a n t s m i g h t l o c a t e t h e i r i l l n e s s t o t h e i r l i v e s , t o t h e c i r c u m s t a n c e s i n w h i c h t h e y b e c a m e i l l a n d t o t h e l i n k s w h i c h t h e y m i g h t make b e t w e e n t h o s e c i r c u m s t a n c e s a n d t h e o n s e t , r e c u r r e n c e o r r e m i s s i o n o f t h e i r s y m p t o m s . I wa s u n w i l l i n g t o a c c e p t , a t f a c e v a l u e , t h e a t t r i b u t i o n s o f p s y c h o s i s o r p s y c h o p a t h o l o g y made b y p s y c h i a t r i s t s , b u t s u s p e c t e d t h a t s t r e s s , o f some s o r t , was l i k e l y t o p l a y a p a r t i n t h e e t i o l o g y o f t h e s y n d r o m e . I a l s o e x p e c t e d t o f i n d t h a t u n c o n s c i o u s o r o u t - o f - a w a r e n e s s c o m m u n i c a t i o n and m e a n i n g m i g h t w e l l b e p e r t i n e n t . A b o v e a l l , I h o p e d f o r a n i n f o r m a n t who m i g h t h a v e f o u n d a way o u t o f t h e i r s u f f e r i n g , o r a t l e a s t p a r t i a l l y s o , and who c o u l d o f f e r some c o n v i n c i n g e v i d e n c e t o a c c o u n t f o r s u c h r e l i e f , w h i c h I h a d n o t e n c o u n t e r e d i n t h e l i t e r a t u r e . I t wa s c l e a r t h a t t h e k i n d o f i n f o r m a t i o n I w o u l d r e q u i r e t o h e l p a n s w e r t h e s e q u e s t i o n s c o u l d o n l y come a s a c o n s e q u e n c e o f a d o p t i n g a m e t h o d o l o g y b y w h i c h I c o u l d b e f u l l y a p p r i s e d o f a n i n f o r m a n t ' s c o n s c i o u s n e s s , i n a r e l a t i o n s h i p o f t r u s t a n d m u t u a l c o n f i d e n c e . I n c h a p t e r t h r e e , I d i s c u s s t h e w a y s i n w h i c h I came t o j u s t i f y t h e m e t h o d o l o g y o f p e r s o n a l i n t e r v i e w i n g a s a n a p p r o p r i a t e s t r a t e g y . I n t h a t c h a p t e r I a t t e m p t t o make c l e a r how t h i s a p p r o a c h s t a n d s i n m a r k e d c o n t r a s t t o t h e m o r e w e l l e s t a b l i s h e d t r a d i t i o n o f s t u d y i n g t h e s o c i a l ' c a u s e s ' o f i l l n e s s . I d i s c u s s t h i s s e c o n d s o c i a l f a c t o r t y p e o f a n a l y s i s i n t h a t c h a p t e r a n d c o n c l u d e t h a t i t i s u l t i m a t e l y n o t much o f an a d v a n c e i n m e t h o d o l o g y o n t h e e p i d e m i o l o g i c a l a p p r o a c h d i s c u s s e d a b o v e . I go o n t o s u g g e s t , i n c h a p t e r t h r e e , t h e w a y s i n w h i c h some o f t h e t h e o r e t i c a l a n d p r a c t i c a l a p p r o a c h e s o f a n t h r o p o l o g y , a n d e s p e c i a l l y t h e a n t h r o p o l o g y o f p e r s o n a l e x p e r i e n c e , i s l i n k e d t o t h e mode I a d o p t e d t o c o l l e c t my d a t a a n d t o make s e n s e o f i t . I t w i l l s u f f i c e h e r e t o s a y t h a t my m e t h o d o l o g i c a l a p p r o a c h was s i m p l e a n d s t r a i g h t f o r w a r d , i n t h a t my i n t e n t was t o i n t e r v i e w some i n d i v i d u a l s who h a d b e e n d i a g n o s e d a s s u f f e r i n g f r o m i n f l a m m a t o r y b o w e l d i s e a s e a n d t o e l i c i t f r o m t h e m w h a t t h e m e a n i n g o f t h e i r c o n d i t i o n h a d f o r t h e m a n d how t h e i r i l l n e s s m i g h t b e r e l a t e d t o t h e i r m o r e g e n e r a l l i f e - c o n t e x t . I wa s d e t e r m i n e d t o b e a l i s t e n e r . I was p r e p a r e d t o a l l o w my i n f o r m a n t s t o t e l l me how t h e y d e f i n e d t h e r e a l i t y o f t h e i r s u f f e r i n g a n d a s much a s p o s s i b l e o n l y t o d i r e c t s u c h q u e s t i o n s t o t h e m w h i c h w o u l d n o r m a l l y b e a s k e d i n a n y f o c u s s e d c o n v e r s a t i o n , s u c h a s p o i n t s o f c l a r i f i c a t i o n o r t h e r e s o l u t i o n o f c l e a r - c u t d i s c r e p a n c i e s i n d i s c u r s i v e e l a b o r a t i o n . I a l s o d e c i d e d t h a t i t was a n e t h i c a l p r o c e d u r e t o a s s u r e my i n f o r m a n t s t h a t I was n o t an a u t h o r i t y o n a n y a s p e c t o f t h e i r c i r c u m s t a n c e s a n d t h a t t h e i r d i s c u s s i o n w i t h me was c o n f i d e n t i a l . I was p r e p a r e d t o g u a r a n t e e t h e i r a n o n y m i t y . I p r e p a r e d t w o d o c u m e n t s , a l e t t e r o u t l i n i n g my i n t e n t i o n s a n d a l e t t e r c o n f i r m i n g t h e t e r m s u n d e r w h i c h t h e i n t e r v i e w w o u l d t a k e p l a c e . ( A p p e n d i x i ) P a y i n g t h e . p r i c e o f c u r i o s i t y B e f o r e t u r n i n g t o e l a b o r a t e a l i t t l e m o r e o n t h e v e r y g e n e r a l s k e t c h o f t h e m a t e r i a l c o n t a i n e d i n t h e n a r r a t i v e s w h i c h I c o l l e c t e d , I w a n t t o o f f e r a c a u t i o n r e g a r d i n g t h e c h a r a c t e r o f t h e p h e n o m e n o l o g i c a l d a t a . I n many o f t h e s e i n t e r v i e w s , I h a d o c c a s i o n t o b e s h o c k e d , d i s g u s t e d a n d o u t r a g e d a t 18 w h a t I h e a r d a n d w h a t I w a s f o r c e d t o c o m p r e h e n d . I f I h a d k n o w n b e f o r e h a n d t h e n a t u r e o f many o f t h e f a c e t s o f t h e e x p e r i e n c e o f s u f f e r i n g i n f l a m m a t o r y b o w e l d i s e a s e , I d o u b t t h a t I w o u l d h a v e c h o s e n t o e m b a r k o n t h i s p r o j e c t a t a l l . To e n t e r t h e w o r l d o f c o n s c i o u s n e s s o f human b e i n g s w h o s e e x p e r i e n c e s a r e r a d i c a l l y d i f f e r e n t f r o m o n e ' s own a n d t o t r y a n d make s e n s e o f t h a t w o r l d i s t o s u f f e r a t l e a s t a d e g r e e o f c u l t u r e - s h o c k . I f t h e r e i s a d d e d , t o t h a t s e n s e - m a k i n g e f f o r t , a g e n u i n e a t t e m p t t o e s t a b l i s h some e m p a t h e t i c u n d e r s t a n d i n g , t h e c o n s e q u e n c e s o f t h a t s h o c k c a n b e f u n d a m e n t a l , a f f e c t i n g t h e w h o l e o f o n e ' s e m o t i o n a l e q u i l i b r i u m . A s I c o l l e c t e d m o r e a n d m o r e o f my i n f o r m a n t s ' e x p e r i e n c e s , I b e g a n t o s e e w i t h i n c r e a s i n g l y c l e a r v i s i o n w h a t t h e e x p l a n a t o r y f r a m e w o r k m i g h t e n t a i l a n d h o w , f o r e x a m p l e , some i n d i v i d u a l s m i g h t w e l l h a v e b e e n s p a r e d many y e a r s o f p a i n a n d s u f f e r i n g , o r m i g h t h a v e b e e n g i v e n m o r e a p p r o p r i a t e a d v i c e . T h e e f f o r t w h i c h I h a d t o e x p e n d t o k e e p my own c o u n s e l w a s m o r e t a x i n g t h a n a l m o s t a n y o t h e r e x p e r i e n c e I h a v e k n o w n i n my f o r t y - p l u s y e a r s , i n c l u d i n g t h e m i n i s t r a t i o n o f m e d i c a l a i d t o m o r t a l l y w o u n d e d y o u n g men d u r i n g my m i l i t a r y s e r v i c e . T h e a n a l y t i c a l a r g u m e n t a n d t h e p r e s e n t a t i o n o f t h e d a t a T h e a n a l y t i c a l a r g u m e n t w h i c h I h a v e d e v e l o p e d r e g a r d i n g t h e e x p e r i e n c e o f s u f f e r i n g i n f l a m m a t o r y b o w e l d i s e a s e a n d w h i c h I h a v e l a i d o u t i n g e n e r a l t e r m s a b o v e , i s t h a t t h e i l l n e s s c a r e e r s a n d a u t o b i o g r a p h i c a l m a t e r i a l w h i c h i s o f f e r e d p a r i - p a s s u c a n b e u n d e r s t o o d a s a s t r u g g l e i n r e f l e x i v i t y . I t i s a s t r u g g l e t o c o n n e c t t h e i n t e r p r e t e d c h a r a c t e r i z a t i o n s o f s e l f made b y o t h e r s w i t h t h e p r o c e s s o f s e l f - u n d e r s t a n d i n g , a n d t o r e c o n c i l e t h e s e c h a r a c t e r i z a t i o n s w i t h t h e n e e d t o h a v e a n a u t h e n t i c i d e n t i t y . T h e c h a r a c t e r i z a t i o n s w h i c h my i n f o r m a n t s r e f e r t o a r e v o i c e d a n d a c t e d o u t b y 19 s i g n i f i c a n t others i n the primary group, i n the face-to-face and intimate world of marriage, kinship and courtship: they are projections of s e l f which the i n d i v i d u a l i s i n c l i n e d to accept, because they are accompanied by the authoritative expectation that the i n d i v i d u a l w i l l see them as c a t e g o r i c a l , rather than as hypothetical imperatives.9 But i n a t t r i b u t i n g to themselves c e r t a i n obligations to act, think, behave and f e e l according to these projections, a l l my informants have discovered c o n f l i c t s i n consciousness a r i s i n g from t h e i r attempts to deal with emotional and/or sexual forms of self-expression which run counter to these ob l i g a t i o n s . In deferring to others the r i g h t to define the nature of t h e i r selfhood, or in seeking legitimate grounds upon which such deference might be denied, the struggle to f i n d an anchorage for the s e l f which promises peace of mind and authenticity is one which seems r e f l e c t e d i n the e r r a t i c and morbid functioning of the body. The problem i s compounded by the fact that the i n d i v i d u a l seems in h i b i t e d from communicating the nature of t h i s struggle to almost anyone, and very r a r e l y , or with great d i f f i c u l t y to the person or persons i d e n t i f i e d as the source of the projected characterizations. A f f e c t i o n combined with resentment, the expectation of j u s t i c e i n the face of perceived i n j u s t i c e , are themes which are interwoven with descriptions of physical s u f f e r i n g . The bodily symptoms are contiguously and coterminously re l a t e d to the focussed rehearsal of such themes i n consciousness. Nevertheless, the r e s o l u t i o n of t h i s c o n f l i c t i s achieved by some i n d i v i d u a l s and the reward i s to be found i n the remission of t h e i r symptoms, which can be apparently complete, or almost so. The r e s o l u t i o n depends on a s u b s t i t u t i o n of a humanistic conscience for an auth o r i t a r i a n 20 o n e , 1 0 w h i c h i n v o l v e s a t r a n s p o s i t i o n o f a t t i t u d i n a l a n d a f f e c t i v e s t y l e s i n s o c i a l r e l a t i o n s h i p s . T h i s t r a n s p o s i t i o n , w h i c h I e x a m i n e a s a n i l l u s t r a t i o n o f c o n v e r s i o n , s e ems b e s t u n d e r s t o o d a s a movemen t f r o m a p o s i t i o n a l v i e w o f s e l f t o a p e r s o n a l i z e d v i e w o f s e l f , a c o n c e p t w h i c h I b o r r o w f r o m t h e a n a l y s i s o f f a m i l i a l s o c i a l i z a t i o n p r o d u c e d b y B e r n s t e i n ( 1 9 6 4 , 1 9 7 0 ) a n d e l a b o r a t e d u p o n b y D o u g l a s ( 1 9 7 8 ) . I n a d o p t i n g t h e p e r s o n a l i z e d v i e w , t h e i n d i v i d u a l f e e l s f r e e t o j u s t i f y t h e t e r m s a n d c o n d i t i o n s o f t h e i r s o c i a l r e l a t i o n s h i p s a n d t o a c k n o w l e d g e t h e v a l i d i t y o f t h e i r e m e r g e n t a n d m o r e a u t h e n t i c e m o t i o n a l a n d a f f e c t i v e s t a t e s . I n my d i s c u s s i o n o f t h e w a y s i n w h i c h c o n v e r s i o n t a k e s p l a c e , I d r a w a t t e n t i o n t o t h e r e m a r k a b l y s i m i l a r e x p e r i e n c e s w h i c h my ' c o n v e r t e d ' i n f o r m a n t s s h a r e , a n d o f t h e i m p o r t a n c e o f t h e i r e x p o s u r e t o n o v e l s o c i a l c o n t e x t s , w h i c h p r o v i d e t h e ' o c c a s i o n ' f o r t h e i r o n t o l o g i c a l s h i f t . ^ J u s t a s i m p o r t a n t , h o w e v e r , i n c o n s i d e r i n g t h i s t r a n s p o s i t i o n o f a t t i t u d e a n d t h e a d o p t i o n o f new w a y s o f d e a l i n g w i t h o t h e r s , i s t h e c h a n g e i n t h e i n t e r p r e t a t i o n o f t h e s e l f a s a d i s e a s e d p e r s o n . T h i s i s a t r a n s f o r m a t i o n o f v i e w p o i n t r e g a r d i n g t h e e x p l a n a t o r y m o d e l o f i n f l a m m a t o r y b o w e l d i s e a s e a n d t h e i m p l i e d c o g e n c y o f t h e m e s s a g e a b o u t t h e p e r s o n c o n v e y e d i n t h e g a s t r o e n t e r o l o g i c a l m o d e l o f i l l n e s s . T h i s i s m o s t c l e a r l y s e e n i n t h e c a s e o f my i n f o r m a n t S a r a h , w h o s e a c c o u n t o f how s h e p u t h e r i l l n e s s b e h i n d h e r wa s c r u c i a l l y i m p o r t a n t t o my u n d e r s t a n d i n g o f t h e s t r u c t u r e a n d d y n a m i c s o f s u f f e r i n g , a n d t o my i n t e r p r e t a t i o n o f my o t h e r i n f o r m a n t s ' a c c o u n t s . I t s eems c l e a r t h a t a n e c e s s a r y s t e p i n h e r r e c o v e r y wa s t o d i s c a r d t h e i d e n t i t y o f h e r s e l f a s t h e o b j e c t - e x e m p l a r o f a d i s e a s e p r o c e s s s , w h i c h s h e h a d l e a r n e d a n d a d o p t e d a s a f u n d a m e n t a l p a r t o f h e r 21 s o c i a l i z a t i o n as a patient. I t i s i n her account which I present f i r s t , and which shows how she benefited from an experience of symbolic h e a l i n g ^ that a very important issue i s raised concerning the r e l a t i o n s h i p between selfhood construction and the role of s u b s t i t u t i v e judgement. For not only did she disavow the i d e n t i t y pressed upon her as an e l i g i b l e wife, but also the symbolic 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 as part of her diagnosis 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. This points up the ways i n which acceptance of the l a t t e r model could well have been an i n d i r e c t contributor to the prolongation of her s u f f e r i n g . In discarding the biomedical explanation of her pathology, Sarah stresses the absurdity of c l i n g i n g to a version of her i l l n e s s which does not address i t s e l f to the question of her s u b j e c t i v i t y , but instead deals with her as an object of diagnostic i n t e r e s t only. Because the biomedical model of disease i s devoid of meaning with respect to personal psychosocial circumstances, because i t is t y p i c a l l y presented a u t h o r i t a t i v e l y as a chain of physiopathological events occurring independently of consciousness and, therefore, beyond any influence which the patient might have to a l t e r i t , there are no reasons why patients b e l i e v i n g e x p l i c i t l y i n such a model have to consider themselves responsible i n any way for the onset, or perpetuation of the symptoms to which the disease model r e f e r s . It negates s u b j e c t i v i t y and relegates i t to dependent status. Behaviour of the body becomes paramount and has independent status. In essence, the epistemology of the disease-model is mechanistic and refers only to the body component of the Cartesian d u a l i t y . When supplied with knowledge which focusses e n t i r e l y on the bodily dysfunction, the patient 22 l e g i t i m a t e l y acts towards the body as separate and apart from thought and i t s morbid functions are understandable only as a disease process 'working i t s e l f out'. There i s then established a s i t u a t i o n i n which the patient thinks of s e l f as a person + a body + a disease, and these domains are insulated from each other i n a constructed symbolic sense. But i t seems cl e a r from Sarah's account and from the accounts of others who have experienced conversion, that i t i s absolutely imperative that a connection be made between self-consciousness and symptomatology, a theoretic which necessarily involves a disvaluing of the disease-model and the message about the s e l f which i t contains. In e f f e c t , i t would appear that the experience of diagnosis and treatment d e f l e c t s attention away from the productive p o t e n t i a l of making the kinds of connections which might lead to c o n v e r s i o n . ^ The paradox i s c l e a r . The very knowledge which the patient seeks and appropriates to him/herself and 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 diseased person, i s dysfunctional to the kind of r e f l e x i v e e f f o r t which others see as leading them toward health, or the recovery of health. In f a c t , as I argue i n my discussion of those informants who s t i l l s u f f e r considerably and c h r o n i c a l l y from i l l n e s s symptoms, b e l i e f i n the v e r a c i t y of the disease-model can be taken as an index, and even as a predictor, of the chances they have for recovery from the pathology. We would then expect to find some c o r r e l a t i o n between the maintenance of b e l i e f i n the disease-model (and the appropriateness of medical and s u r g i c a l intervention and treatment) and the presence of unresolved c o n f l i c t concerning the s e l f ' s r e l a t i o n s h i p with others. As I t r y to i l l u s t r a t e i n the presentation of my data, t h i s c o r r e l a t i o n seems to e x i s t . Furthermore, there are, as I suggested above, 23 three f a i r l y d i s t i n c t formulations of experience r e f l e c t e d i n the natural h i s t o r y of s u f f e r i n g , where the structure and dynamics of self-symbolization reveal v a r i a t i o n s of the basic themes of insightfulness into the nature of a patient's view of i l l n e s s . In the attainment of an authentic sense of selfhood, which follows on from the conversion experience, i n d i v i d u a l s not only f i n d themselves able to discount inappropriate characterizations of t h e i r selfhood, but also cut communicative t i e s with any person or persons who p e r s i s t s i n making such characterizations. This e f f o r t seems to be rewarded i n the form of a remission of symptoms. This process i s accompanied and interdependent with the relegation of the gastroenterological model to a subordinate status i n the hierarchy of meaning for the informants. For them, the value of s u b j e c t i v i t y i s regained and the body i s understood as answering to consciousness. In chapters four and f i v e , I present the accounts of individuals who f a l l into t h i s category. There are other informants, dealt with i n chapter s i x , who can be seen to be i n an intermediary phase of t h i s ontogentic or accretive process. Their main preoccupation i s the e f f o r t to make attempts to fi n d reasons and j u s t i f i c a t i o n s for a l l e v i a t i n g t h e i r equivocating attitudes about themselves, attitudes which ar i s e because of disjunctions between the ways in which they i n t u i t i v e l y f e e l they should act and the ways i n which the projected versions of them made by others i n s i s t that they should f e e l and act. They can be seen to be doing t h i s by tracing and re - t r a c i n g possible linkages between s t r e s s f u l events, and e s p e c i a l l y emotionally charged events, and the onset and continuing recurrence of t h e i r diarrhoea and other symptoms. At the same 24 time, they make e f f o r t s to solve the problem presented by the biomedical meaning of t h e i r s u f f e r i n g when contrasted with events which they see as bearing some contributory r e s p o n s i b i l i t y for t h e i r sickness. These informants, who seem to be quite aware of the detrimental 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 t h e i r r e l a t i o n s h i p s with others, nevertheless do not seem able to r i d themselves of t h e i r g u i l t and anxiety nor cut the communicative t i e s which bind them to those who they i d e n t i f y as the source of t h e i r confusion. Neither do they seem able to make the leap of understanding and a t t a i n the conversion i n selfhood revealed by Sarah and others in her category. And although the biomedical treatment and surgery they have received has not been p a r t i c u l a r l y successful in r e l i e v i n g them of the i r symptoms, and they have been degraded and often abused i n t h e i r experiences as patients, they r e t a i n t h e i r f a i t h , i n varying degrees, in the biomedical gastroenterological model of disease. In chapter seven, I turn to the presentation of accounts of i n d i v i d u a l s whose consciousness can be viewed, h e u r i s t i c a l l y , as having a t r i p a r t i t e structure: s e l f , s o c i a l s e l f and bodily s e l f . These aspects of consciousness are seen to be competing for p r i o r i t y of focus and attention. What might be referred to as primary intentions, s o c i a l l y sanctioned intentions and b i o s c i e n t i f i c intentions are apparently insulated from each other. Here, more c l e a r l y than i n the other categories of informants, i t i s possible to see the r o l e played by biomedical s o c i a l i z a t i o n i n creating a form of self-reference as a diseased person, which dominates the r e f l e x i v e process. Despite the fact that these are exactly the same themes of degradation, o b j e c t i f i c a t i o n and manipulation by others which are found in a l l the 25 a u t o b i o g r a p h i e s , a n d t h e s o u r c e s o f t h e s e p r o j e c t i o n s a r e r e m a r k a b l y s i m i l a r ; d e s p i t e t h e d e c l a r a t i o n s o f r e s e n t m e n t b y t h e s e i n f o r m a n t s o f t h e p r o j e c t i o n s made b y t h e m , t h e y s e e m t o b e s o f a s c i n a t e d b y t h e i r t r e a t m e n t and b y t h e a u t h o r i t y o f o t h e r s t h a t t h e y c a n n o t f i n d t h e m e a n s t o d i s e n g a g e t h e m s e l v e s f r o m t h o s e t h e y a c c u s e o f i m p r o p e r c o n d u c t t o w a r d t h e m . T h e i r a t t i t u d e t o a u t h o r i t y t h u s a p p e a r s t o t a k e o n t h e c h a r a c t e r o f d i s o b e d i e n t d e p e n d e n c e . I n r e v i e w i n g t h e e x p e r i e n c e s o f t h o s e i n f o r m a n t s who f a l l i n t o t h e t h i r d c a t e g o r y , my a r g u m e n t t h e n m o v e s o n t o c o n s i d e r t h e g r o u n d s a n d c i r c u m s t a n c e s w h e r e b y t h e i n t e g r a t i o n o f a p p a r e n t l y s e p a r a t e d d o m a i n s o f t h o u g h t a n d a c t i o n m i g h t come a b o u t . T h i s I d o b y r e f e r r i n g b a c k t o t h e p s y c h o d y n a m i c a n d s o c i o d y n a m i c p r i n c i p l e s w h i c h a p p e a r e d t o w o r k f o r t h o s e who c o n s i d e r t h e m s e l v e s h e a l e d , o r v i r t u a l l y s o . T h i s t h e n l e a d s t o my c o n c l u d i n g c h a p t e r , i n w h i c h I d e v e l o p a n a r g u m e n t b a s e d o n my e x p e r i e n c e s o f e n c o u n t e r i n g i n f l a m m a t o r y b o w e l d i s e a s e i n t h e l i t e r a t u r e a n d i n t h e p r a x i s o f t h e i l l n e s s c a r e e r s o f my i n f o r m a n t s . H e r e , I o f f e r some t e n t a t i v e e x p l a n a t i o n s f o r t h e o c c u r r e n c e , i n c i d e n c e a n d p e r p e t u a t i o n o f i n f l a m m a t o r y b o w e l d i s e a s e i n W e s t e r n c u l t u r e s , t o g e t h e r w i t h a b r i e f r e v i e w o f h ow t h e s y n d r o m e i s p r o d u c e d , i n t e r p r e t e d a n d a c t e d u p o n i n t h e p a r t i c u l a r c u l t u r a l c o n t e x t i n w h i c h my i n t e r v i e w s t o o k p l a c e . I e n d e a v o u r t o make s e n s e o f t h e i n f o r m a t i o n I o b t a i n e d i n t h e l i t e r a t u r e r e g a r d i n g i n f l a m m a t o r y b o w e l d i s e a s e and r e f e r some o f t h e m o r e s a l i e n t p o i n t s b a c k t o my d a t a . I a l s o a t t e m p t t o r e v i e w t h e r e a s o n s why c e r t a i n i n d i v i d u a l s a r e s u s c e p t i b l e t o t h e p a t h o l o g y a n d r e l a t e t h i s e x p l a n a t o r y a c c o u n t t o b o t h s t r u c t u r a l a n d i d e o l o g i c a l c h a n g e i n m o d e r n s o c i e t i e s . I n 26 t h i s r e g a r d , I l i n k my r e f e r e n c e s t o t h e p o s i t i o n a l v e r s u s t h e p e r s o n a l w i t h t h e b r o a d e r t h e o r i e s o f s o c i a l o r g a n i z a t i o n e x e m p l i f i e d i n t h e w o r k o f s o c i a l t h e o r i s t s . I a l s o r e c a p i t u l a t e t h e a r g u m e n t made h e r e t h a t t h e p a r a m o u n t t h e m e i n t h e s u f f e r a n c e o f i n f l a m m a t o r y b o w e l d i s e a s e i s t h e m a n n e r i n w h i c h t h e i n d i v i d u a l d e a l s w i t h a u t h o r i t y a n d p a r t i c u l a r l y w i t h t h e m o r a l a u t h o r i t y v e s t e d i n i n t i m a t e and a s c r i b e d r e l a t i o n s h i p s . T h i s l e a d s me t o a f i n a l d i s c u s s i o n r e g a r d i n g t h e p r o d u c t i o n o f i n f l a m m a t o r y b o w e l d i s e a s e a s a c u l t u r a l a r t i f a c t , w h i c h I s u g g e s t m u s t b e u n d e r s t o o d a s a m a l a d a p t i v e i n v e n t i o n t o d e a l w i t h m a l a d a p t i v e p s y c h o s o c i a l c i r c u m s t a n c e s . I n c o l l a p s i n g d i s e a s e a n d i l l n e s s i n t o a s i n g l e p h e n o m e n o n a n d i n t a k i n g t h e d a t a o f i l l n e s s e x p e r i e n c e i n t o a c c o u n t , I a r g u e t h a t b i o m e d i c a l s c i e n c e may i n f a c t b e p l a y i n g a s i g n i f i c a n t r o l e i n t h e p e r p e t u a t i o n o f t h e p a t h o l o g y . I f t h i s i s s o , t h e n , a g r e a t d e a l o f t h e r e s e a r c h e f f o r t r e l a t i n g t o i n f l a m m a t o r y b o w e l d i s e a s e , w i t h i t s c o n s i d e r a b l e e x p e n d i t u r e o f f i s c a l a n d o r g a n i z a t i o n a l r e s o u r c e s , m i g h t i n f a c t b e c o m p o u n d i n g t h e p r o b l e m o f c o n f i r m i n g a p a r t i a l f o r m o f u n d e r s t a n d i n g t h e s y n d r o m e . T h i s r e s e a r c h e f f o r t , b u i l t u p o n t h e c h a r a c t e r o f d i a g n o s t i c c a t e g o r i e s , i s a c c o m p a n i e d b y a c o n s i s t e n c y o f i n t e r p r e t a t i o n i n p r o f e s s i o n a l c o m m u n i c a t i o n and t h e m e d i a a t l a r g e , w h i c h s h a p e s p u b l i c o p i n i o n t o e n d o r s e t h e f e a r f u l a n d i n t r a n s i g e n t n a t u r e o f i n f l a m m a t o r y b o w e l d i s e a s e , w h i c h i s p r e s e n t e d a s a ' c o n d i t i o n ' b e s t c o n f r o n t e d a n d d e a l t w i t h b y t h o s e e x p e r t s w h o s e a r m a m e n t a r i u m c o n s i s t s p r i n c i p a l l y o f s t e r o i d s a n d s c a l p e l s . ( A p p e n d i x i i ) . I n t h e n e x t c h a p t e r , I e x p l o r e some o f t h e i n t e r p r e t a t i o n s w h i c h h a v e b e e n o f f e r e d t o a c c o u n t f o r i n f l a m m a t o r y b o w e l d i s e a s e a s a p a t h o l o g y i n b i o m e d i c i n e , p s y c h i a t r y a n d e p i d e m i o l o g y . 27 FOOTNOTES TO CHAPTER 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 m o r e e x o t i c w o r l d s t o e x p l o r e . I n h e r a r t i c l e f r o m w h i c h t h i s p e r h a p s 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 e n d t h a t o u r s i s o n e o f t h e m o s t b i z a r r e o f a l l c u l t u r e s and o n e , b y 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 ' o r ' g o o d ' i n u r g e n t n e e d o f s t u d y ' . N a d e r , L . , ' U p t h e 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 G a i n e d f r o m S t u d y i n g U p ' i n R e i n v e n t i n g  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 , Random H o u s e , New Y o r k 1 9 7 4 : 2 8 4 - 3 1 1 . 2 . I u s e t h e t e r m i n t h e s e n s e t h a t H o r a c i o F a b r e g a h a s d e f i n e d i t , ' T h e 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 a n d 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 s o m e o n e i s i l l . T h i s t e r m d e s i g n a t e s a c h a i n o f 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 w h e n t h e i l l n e s s 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 ' . F a b r e g a , 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 R e v i e w o f A n t h r o p o l o g y V o l . 7 , 1 9 7 1 : 1 6 7 - 2 2 9 . 3 . T h e e g o 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 u s e t h i s p h r a s e a s a 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 t h e i n f l u e n c e s i n my 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 a n d S o c i e t y , U n i v e r s i t y o f C h i c a g o P r e s s , C h i c a g o 1 9 3 4 . 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 own p a t e r n a l g r a n d f a t h e r , t o g e t h e r 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 a s ( b y some r e p o r t s ) t h e p r e s e n t G o v e r n o r - G e n e r a l o f C a n a d a . 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 a n d 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 g r o u p s , w i t h s e v e r e b o w e l d i s e a s e . A s many a s h a l f o f t h e s e a r e b e l i e v e d t o h a v e o s t o m i e s - a r t i f i c i a l o p e n i n g s f o r t h e r e m o v a l o f w a s t e p r o d u c t s t h r o u g h t h e a b d o m i n a l w a l l b e c a u s e a l l o r p a r t o f t h e c o l o n h a s b e e n r e m o v e d . V i z . ' S e v e r e b o w e l d i s e a s e s a f f e c t o n e p e r s o n i n 1 0 0 , a r e o n 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 o n t h e q u e s t i o n o f e p i d e m i o l o g y i n c h a p t e r t w o . 5 . T h i s i s n o t t o b e i n t e r p r e t e d a s 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 t h e s e n s e o f e m p t y - h e a d e d n e s s . R a t h e r , i t i s t o t r y t o s e e t h i n g s a s 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 . I n 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 , a s S c h u t z p o i n t s o u t , i n d i v i d u a l s 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 o b j e c t . 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 , T h e H a g u e , 1 9 6 7 : 7 - 9 . 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 , o n e c o u l d c i t e F o u c a u l t , M . , T h e B i r t h o f t h e C l i n i c : A n 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 . A s 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 . , T h e D e v e l o p m e n t o f M e d i c i n e a s 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 . A s a t r a n s c u l t u r a l p h e n o m e n o n , K l e i n m a n , A . , P a t i e n t s a n d H e a l e r s i n t h e C o n t e x t o f C u l t u r e U n i v e r s i t y o f C a l i f o r n i a P r e s s , B e r k e l e y , 1 9 8 0 , e s p e c i a l l y p p 2 4 - 7 0 . T h e 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 b y F a b r e g a , H . , i n h i s e s s a y , ' T h e S c o p e 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 a n d  P s y c h i a t r y 1 , 1 9 7 7 : 2 0 1 - 2 2 8 . T h i s q u e s t i o n o f d i s e a s e - r e i f i c a t i o n o c c u r s i n a l m o s t e v e r y d i s c u s s i o n o f W e s t e r n m e d i c a l p r a c t i c e . F o r o n e o f t h e m o s t s u c c i n c t a n d 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 , s e e 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 a n d 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 a n d 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 S c i e n c e s D . R e i d e l P u b l i s h i n g , D o r d r e c h t , 1 9 7 5 : 6 7 - 8 3 . A l s o F o u c a u l t , M . , o p . c i t . ; f o r a b r i e f r e v i e w o f t h e h i s t o r i c a l d e v e l o p m e n t o f t h e c o n c e p t , s e e I l l i c h , I . , ' T h e I n v e n t i o n a n d E l i m i n a t i o n o f D i s e a s e ' i n 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 . T h e b e s t c r i t i q u e i s a r g u a b l y c o n t a i n e d i n G . L . E n g e l ' s a r t i c l e , ' T h e n e e d 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 . 1 9 6 , N o . 4 2 8 6 , 8 t h A p r i l , 1 9 7 7 : 1 2 9 - 1 3 5 . A n 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 t h e 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 o f m a j o r p r o p o r t i o n s . T h e t e r m s l a c k p r e c i s i o n . I l l n e s s t e n d s t o b e u s e d t o r e f e r t o w h a t i s w r o n g w i t h t h e p a t i e n t , d i s e a s e t o w h a t i s w r o n g 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 m e r i t . A s 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 a n d D i s e a s e ' , a s y m p o s i u m p a p e r o n 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 , T h e M e d i c a l C l i n i c s o f N o r t h A m e r i c a v o l 6 1 , N o . 4 , J u l y , 1 9 7 7 ) i l l n e s s c a n b e c o n t r a s t e d t o d i s e a s e i n t e r m s o f p a t i e n t s ' e x p e r i e n c e s v s . p h y s i c i a n s ' a p p r e h e n s i o n s , s ymp t oms 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 v s . c o n s e n s u a l v a l i d a t i o n , a f f e c t i n g t h e 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 , a n d s o o n . B u t t h e r e a r e c l e a r l i m i t a t i o n s i n h e r e n t i n s u c h c a t e g o r i z a t i o n w h i c h c a n l e a d t o t h e 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 b e c o m e r e i f i e d , o r t y p i f i e d . 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 p a t i e n t s ' v i e w , ' 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 a s t h e s u f f e r a n c e o f 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 a s a n o b j e c t . One o f 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 o n t h e a s s u m p t i o n t h a t w h a t s h o u l d b e 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 r e s p o n s e t o ' d i s e a s e ( s ) ' w h e n t h e l a t t e r i s c o n s i d e r e d a s a r e a l i s t i c e n t i t y , a n d t h e ' f a c t s ' o f i l l n e s s a r e t h e s o c i a l l y d i f f e r e n t i a t e d r e s p o n s e s t o 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 s a m e . T h i s l e a v e s b i o m e d i c a l d e f i n i t i o n s o f r e a l i t y u n e x a m i n e d o r g l o s s e d a n d t a k e n f o r g r a n t e d . S ee 29 F a b r e g a , H . , 1 9 7 7 : 2 1 4 . A l s o a c r i t i c a l r e v i e w o f T a l c o t t P a r s o n s ' m e d i c a l s o c i o l o g y w i t h r e s p e c t t o t h i s q u e s t i o n , i n E . L . I d l e r ' s a r t i c l e , ' D e f i n i t i o n s o f H e a l t h a n d I l l n e s s and M e d i c a l S o c i o l o g y ' , i n 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 . 1 3 A , 1 9 7 9 : 7 2 3 - 3 1 . F o r m e d i c a l a n t h r o p o l o g y a n d 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 e v e n m o r e a c u t e : i n t h e a b s e n c e o f 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 o f W e s t e r n 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 s ymp t oms i n o t h e r c u l t u r e s w h i c h may b e r e c o g n i z a b l e a s ' 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 a n d 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 b y n a t i v e i n f o r m a n t s . S e e , f o r a n 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 a n d a n t h r o p o l o g i s t d e a l i n g 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 i n P s y c h i a t r i c A n t h r o p o l o g y o f 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 , U n i v e r s i t y P r e s s o f H a w a i i , H o n o l u l u , 1 9 7 4 . A l s o G o o d , B . J . , ' T h e h e a r t o f w h a t ' 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 a n d  P s y c h i a t r y 1 , 1 9 7 7 : 2 5 - 5 8 , a n d a h o s t o f o t h e r e t h n o m e d i c a l e t h n o g r a p h i e s . T h i s i s n o t t o s u g g e s t t h a t p a t h o l o g i e s i n n o n - W e s t e r n c u l t u r e s a r e w i t h o u t n a m e s , o r g o , a s i t w e r e 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 e x a m p l e , w r o t e o f t h e A z a n d e : " I n s u c h c a s e s , t h e d i s e a s e h a s t o b e d i a g n o s e d and named a n d a s p e c i f i c r e m e d y a p p l i e d . T h i s v e r y n a m i n g a n d 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 a n d 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 , 1 9 3 7 : 5 0 8 . I n my own 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 s ymp t oms w h i c h m i g h t i n d i c a t e , t o a W e s t e r n d i a g n o s t i c i a n , t h e p r e s e n c e o f i n f l a m m a t o r y b o w e l 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 a n d 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 a n d r e c t u m , w h i c h i s b e l i e v e d b y t h e m t o b e b r o u g h t a b o u t b y s o r c e r y . T h e ' i l l n e s s ' c o m p o n e n t i n v o l v e s ' f e e l i n g p a i n a l l o v e r ' , a nd ' f e v e r ' . S e e 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 A S A M o n o g r a p h 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 , 1 9 7 6 : 4 2 2 - 4 9 9 . L e s s s p e c i f i c a l l y i n t e r m s o f s y m p t o m s , b u t 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 a n d s o m e t i m e s 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 d u e t o f r i g h t . I n C h o n t a l s o c i e t y f o r e x a m p l e , t h e 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 a b o u t s u c h s y m p t o m s i s f o u n d i n t h e a c t i o n s o f o l d e r m e n , w h o s e ' 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 t h e c o e r c i v e p o w e r t h e y h a v e o v e r y o u n g e r 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 a n d f o r e c a s t s o f c a l a m i t y . See T u r n e r , P . , ' W i t c h c r a f t a s 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 , D i s e a s e  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 , 1 9 7 7 : 2 2 6 - 7 . T h a t i s t o s a y , a n i m p e r a t i v e w h i c h s t a t e s i n a b s o l u t e t e r m s w h a t o n e ' o u g h t ' t o d o . T h i s i s E r i c h F r o m m ' s t e r m i n o l o g y . S e e h i s M a n f o r H i m s e l f . A n I n q u i r y  i n t o t h e P s y c h o l o g y o f E t h i c s F a w c e t t P r e m i e r B o o k s , H o l t R i n e h a r t and W i n s t o n , New Y o r k , 1 9 7 0 . 30 1 1 . T h e o c c a s i o n s eems t o b e a s o u r c e o f t r u t h . S e e , f o r a n 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 a n d s o u r c e s o f t r u t h , B u r r i d g e , K . , S o m e o n e , N o o n e P r i n c e t o n U n i v e r s i t y P r e s s , P r i n c e t o w n , New J e r s e y , 1 9 7 9 , C h a p t e r T. 1 2 . A p r o c e s s o f s p e c i a l i n t e r e s t i n m e d i c a l a n t h r o p o l o g y . S ee M o e r m a n , D . E . , ' A n t h r o p o l o g y o f S y m b o l i c H e a l i n g ' C u r r e n t A n t h r o p o l o g y V o l 2 0 , N o . 1, M a r c h , 1 9 7 9 : 5 9 - 8 0 . 1 3 . The e f f e c t o f d e f l e c t i n g a t t e n t i o n i s s u g g e s t i v e o f a v e r y s u b t l e u s e o f p o w e r , a s I a r g u e i n my c o n c l u d i n g c h a p t e r . CHAPTER I I A c q u i r i n g a F o r m a l E d u c a t i o n 32 I n t r o d u c t i o n My f i r s t e n c o u n t e r w i t h t h e m e d i c a l r a t i o n a l e u s e d t o a c c o u n t f o r t h e s y m p t o m a t o l o g y a s s o c i a t e d w i t h ' i n f l a m m a t o r y b o w e l d i s e a s e ' was some y e a r s c ago w h e n I was w o r k i n g a s a p a r a m e d i c i n a m i l i t a r y h o s p i t a l . A t t h a t t i m e , I t o o k i t f o r g r a n t e d t h a t t h e e x p l a n a t i o n s o f f e r e d b y t h e d i a g n o s i s d i d n o t s a t i s f y t h e e x p e c t a t i o n s o f p a t i e n t s l o o k i n g f o r a c u r e . A s w i t h f o r m s o f i l l n e s s s u c h a s c a n c e r , I B D w a s r e l e g a t e d t o t h a t c l a s s o f i l l n e s s e s w h i c h w e r e ' m a n a g e d ' , i n t h a t e v e r y e f f o r t was made t o c o n t r o l t h e o c c u r r e n c e a n d s e v e r i t y o f b i o p h y s i c a l d y s f u n c t i o n w h i l s t a t t e m p t i n g t o k e e p t h e p a t i e n t as c o m f o r t a b l e a s p o s s i b l e d u r i n g t h e c o u r s e o f t h e d i s e a s e . M u c h m o r e r e c e n t l y , a n d b e f o r e I b e g a n c o l l e c t i n g f i r s t - h a n d a c c o u n t s , I b e g a n a s e a r c h i n t h e m e d i c a l l i t e r a t u r e i n a n a t t e m p t t o d i s c o v e r w h a t p r o g r e s s h a d b e e n made i n t h e u n d e r s t a n d i n g , t r e a t m e n t a n d c o n t r o l o f t h e s y n d r o m e . T h i s s e a r c h t o o k me i n t o t h e a s s o c i a t e d m e d i c a l d o m a i n s o f p s y c h i a t r y a n d e p i d e m i o l o g y . I t h e n b e g a n t o l o o k f o r w a y s t o d e t e r m i n e how t h e s y n d r o m e was i n t e r p r e t e d a n d c o m m u n i c a t e d t o p a t i e n t s i n a l o c a l c u l t u r a l c o n t e x t . I n t h i s c h a p t e r , I w a n t t o r e v i e w , i n s ummary f o r m , t h e r e s u l t s o f my r e s e a r c h i n t h e l i t e r a t u r e , i n o r d e r t o p r o v i d e some i d e a o f t h e b a c k g r o u n d i n f o r m a t i o n c o n c e r n i n g I BD w h i c h I h a d a c c u m u l a t e d b e f o r e a n y i n t e r v i e w s w i t h IBD s u f f e r e r s h a d t a k e n p l a c e a n d b e c a u s e i t r e p r e s e n t s a m a j o r p a r t o f t h e c o n t e x t i n w h i c h my d e c i s i o n t o u n d e r t a k e t h o s e i n t e r v i e w s w a s f o r m u l a t e d . I a l s o w a n t t o p r o v i d e a g e n e r a l r e v i e w o f t h e t y p e and c h a r a c t e r o f i n f o r m a t i o n I r e c e i v e d f r o m m e d i c a l p e r s o n n e l who s e r v e t h e c o m m u n i t y i n w h i c h my r e s e a r c h t o o k p l a c e a n d f r o m whom many o f my r e s p o n d e n t s r e c e i v e d 33 t h e i r m e d i c a l c a r e a n d a t t e n t i o n . F i n a l l y , I w a n t t o s u m m a r i z e w h a t I b e l i e v e t o b e t h e d o m i n a n t ' e x p l a n a t o r y m o d e l ' w h i c h g u i d e s t h e c l i n i c a l a c t i o n s o f l o c a l h e a l t h - c a r e s p e c i a l i s t s , h ow t h a t m o d e l s e e m e d t o b e r e f l e c t e d i n t h e a t t i t u d e s o f I B D s u f f e r e r s when I f i r s t made c o n t a c t w i t h t h e m , a n d t o d i s c u s s my d e c i s i o n t o u n d e r t a k e a n e t h n o g r a p h y i n t o t h e n a t u r e o f t h e i r s u f f e r i n g . T h e m e d i c a l d e f i n i t i o n s o f IBD The e s t a b l i s h e d i n t e r p r e t a t i o n s o f I B D w h i c h I k n e w o f i n my m e d i c a l e x p e r i e n c e a l s o r e p r e s e n t t h e f r a m e o f r e f e r e n c e a n d p o i n t o f d e p a r t u r e i n my r e v i e w o f t h e l i t e r a t u r e o n t h e s u b j e c t . T h e m o s t commmon f o r m o f ' b o w e l - t r o u b l e ' w h i c h I h a d e n c o u n t e r e d i n h o s p i t a l p a t i e n t s w a s a f f o r d e d t h e d e s i g n a t i o n ' u l c e r a t i v e c o l i t i s ' : a n o t h e r c o n d i t i o n , w h i c h wa s p l a c e d i n a s e p a r a t e d i a g n o s t i c c a t e g o r y , b u t was o f t e n t h o u g h t t o b e a f f i l i a t e d w i t h u l c e r a t i v e c o l i t i s , wa s r e g i o n a l e n t e r i t i s , o r ' C r o h n ' s d i s e a s e ' . T h e r e i s a g o o d d e a l o f e q u i v a l e n c e i n t h e i n t e r p r e t a t i o n s o f u l c e r a t i v e c o l i t i s a n d C r o h n ' s d i s e a s e i n m e d i c a l t e x t s . Wha t f o l l o w s h e r e a r e e x t e n d e d e x c e r p t s o f t h i s b i o m e d i c a l u n d e r s t a n d i n g o f I B D , w h i c h made s e n s e t o me a s a r a t i o n a l e f o r m e d i c a l a c t i o n s a n d t h e r a p e u t i c t r e a t m e n t i n a h o s p i t a l s e t t i n g : -" T h e t e r m " 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 u s e d t o d e s c r i b e a n 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 , c h a r a c -t e r i z e d b y b l e e d i n g a n d u l c e r a t i o n , w h i c h i s n o t a t t r i b u -t a b l e t o a n y 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 a n d t e n d e r n e s s o v e r t h e c o l o n . E x a m i n a t i o n o f t h e s t o o l s s h o w s t h e p r e s e n c e o f p u s a n d b l o o d b u t n o E . h i s t o l y t i c a , a n d 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 b e 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 s how 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 i s 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 s h o w c h a n g e s 34 i n t h e c o l o n . A l l g r a d e s o f s e v e r i t y o c c u r , f r o m t h e 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 o n e o r t w o 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 , t o a c o n d i t i o n i n w h i c h t h e e v a c u a t i o n o f w a t e r y , b l o o d y 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 t o d e a t h w i t h i n a f e w w e e k s . T h e r e i s n o s p e c i f i c t r e a t -m e n t . I f t h e s y m p t o m a t i c m e a s u r e s d i s c u s s e d b e l o w a r e p r o v i d e d a n d 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 r e m i s s i o n i s l i k e l y i n t h e m a j o r i t y o f c a s e s . 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 o v e r l o n g p e r i o d s s i n c e t h e c o u r s e o f t h e d i s e a s e e x t e n d s o v e r m o n t h s o r y e a r s r a t h e r t h a n w e e k s . 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 m a i n t e n a n c e o f n u t r i t i o n i s t h e c h i e f c o n s i d e r a t i o n i n t r e a t m e n t . W a t e r a n d e l e c t r o l y t e l o s s m u s t b e r e p l a c e d t h e u s e o f c o r t i s o n e s s u c h a s p r e d n i s o n e g r e a t l y i n c r e a s e s t h e c h a n c e o f a r e m i s s i o n s t e r o i d s s h o u l d 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 c o l i t i s a s t a t e o f e u p h o r i a f r e q u e n t l y r e s u l t s ( f r o m t h e a d m i n i s t r a t i o n o f p r e d n i s o n e ) . T h e 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 s hows v a r i o u s a b n o r m a l i t i e s . 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 , o t h e r s a r e a p a t h e t i c , d e p r e s s e d o r e v e n 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 . T h i s p s y c h o l o g i c a l s t a t e i s n o t s p e c i f i c t o u l c e r a t i v e c o l i t i s . I t i s s e e n i n a n y 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 a n d 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 s e ems t h a t n o o r d i n a r y h uman 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 e q u a b l e u n d e r t h e c o n d i t i o n s i m p o s e d b y u l c e r a t i v e c o l i t i s , 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 b e r e g a r d e d a s a n o r m a l r e s p o n s e t o t h e s e c o n d i t i o n s t h e m o s t s t r i k i n g c h a n g e i n t h e o u t l o o k o f 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 i s s e e n a f t e r a s u c c e s s f u l c o l e c t o m y s u r g i c a l t r e a t m e n t h a s p r o g r e s s e d . 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 t h a t c a n b e s e c u r e l y s e a l e d t o t h e s k i n a r o u n d t h e o p e n i n g , a n d h e n c e o n e 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 i l e o s t o m y h a s b e e n l a r g e l y o v e r c o m e . I l e o s t o m y s h o u l d b e c o m b i n e d w i t h t o t a l c o l e c t o m y a p a t i e n t may b e c o n s i d e r e d s u i t a b l e f o r s u r g e r y b e c a u s e o f t h e i n t r a c t i -b i l i t y o f t h e d i s e a s e , t h a t i s , b e c a u s e o f r e p e a t e d r e l a p s e s d e s p i t e a d e q u a t e t r e a t m e n t , o r b e c a u s e o f 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 o r r e c t a l s t r i c t u r e o r r e c t o - v a g i n a l f i s t u l a . C r o h n ' s d i s e a s e T h i s t e r m i s a p p l i e d t o a n o n -s p e c i f i c , u s u a l l y c h r o n i c , i n f l a m m a t o r y l e s i o n f o u n d i n o n e o r m o r e 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 . T y p i -c a l l y t h e b o w e l i s t h i c k e n e d w i t h a n a r r o w l u m e n w h i l e t h e m u c o s a l s u r f a c e s h o w s 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 . T h e 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 n u m b e r s o f e n l a r g e d l y m p h g l a n d s t h e p a t i e n t may p r e s e n t i n v a r i o u s w a y s . T h e f i r s t a t t a c k i s f r e q u e n t l y m i s d i a g n o s e d a s a p p e n d i c i t i s 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 i n t e s t i n a l o b s t r u c t i o n , w h i l e i f u l c e r a t i o n i s t h e p r e d o m i n a n t f e a t u r e , t h e c a s e may b e m i s t a k e n f o r o n e 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 n o k n o w n s p e c i f i c t r e a t m e n t . C o r t i c o s t e r o i d s h a v e b e e n t r i e d i n t h e same d o s a g e s a s f o r u l c e r a t i v e c o l i t i s 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 s how a r e s p o n s e t o make o n e o f t h e s e d r u g s w o r t h a t r i a l I t i s 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 a n d b l e e d i n g r e s p o n d b e s t t o t h i s t h e r a p y . A p a r t f r o m e p i s o d i c p a i n s , t h e r e i s o f t e n c o n s t a n t p a i n d u e t o p e r i t o n i t i s . T h i s w i l l r e q u i r e a n a l g e s i c s 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 f o r w e e k s a s t h e d i s e a s e w a x e s a n d w a n e s I f t h e d i s e a s e 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 b e c o m e m o r e f r e q u e n t o r 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 b e i n d i c a t e d . T h e s u r g i c a l t r e a t m e n t o f t h e 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 o r s h o r t - c i r c u i t i n g t h e a f f e c t e d p o r t i o n o f t h e g u t . A t f i r s t s i g h t r e s e c t i o n p r o m i s e s a c u r e o f t h e d i s e a s e b u t w h e n 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 u p , i t i s f o u n d t h a t a v e r y h i g h p r o p o r t i o n h a v e a r e c u r r e n c e o f t h e 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 s e g m e n t a l o n e b u t w i t h a s e r i e s o f d i s e a s e d a r e a s w i t h n o r m a l i n t e r v e n i n g b o w e l , w h i c h w i l l r e q u i r e e i t h e r a s e r i e s o f s e p a r a t e d r e s e c t i o n s o r a m a s s i v e r e s e c t i o n o f t h e b o w e l . S u c h o p e r a t i o n s c a n b e f o l l o w e d b y a n i n t r a c t a b l e s t a t e o f m a l a b s o r p t i o n . 1 1 ( D u n l o p , e t . a l . , 1 9 6 1 : 5 3 2 - 5 3 9 . 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 , p s y c h o l o g i c a l p a t h o g e n e s i s ? I n a n a t t e m p t t o e x p a n d u p o n t h i s b i o m e d i c a l m o d e l , I b e g a n f i r s t o f a l w i t h a r e v i e w o f t h e l i t e r a t u r e d e a l i n g w i t h u l c e r a t i v e c o l i t i s , i n a s e a r c h f o r a n e t i o l o g i c a l e x p l a n a t i o n . What I d i s c o v e r e d wa s t h a t a n i n t e r e s t i n t h e c a u s e s o f u l c e r a t i v e c o l i t i s u n d e r s c o r e s a h i s t o r y o f t h e o r i e s , r e s e a r c h and d e b a t e g o i n g b a c k a l m o s t s i x t y y e a r s . I n t h e 1 9 2 0 ' s , i t wa s s u g g e s t e d t h a t a b a c t e r i a l a g e n t was r e s p o n s i b l e . I n t h e 1 9 3 0 ' s u l c e r a t i v e c o l i t i s was t h o u g h t t o b e b r o u g h t a b o u t b y s e n s i t i v i t y t o some a l l e r g i c f a c t o r . I n t h e 1 9 4 0 ' s s p e c u l a t i o n i n c r e a s e d c o n c e r n i n g t h e r o l e o f a f u n g u s , o r some v i r u s a s a c o n t r i b u t i v e p a t h o g e n . C u r r e n t l y , some a t t e n t i o n h a s b e e n d i r e c t e d t o t h e p r o b a b i l i t y t h a t u l c e r a t i v e c o l i t i s , l i k e C r o h n ' s d i s e a s e , i 36 a m a n i f e s t a t i o n o f a n a u t o - i m m u n e r e a c t i o n , o r r e l a t e d t o d i e t . A l s o , s i n c e a b o u t 1 9 3 0 , t h e r e h a s b e e n a c o n t i n u i n g and s o m e t i m e s a n t a g o n i s t i c d e b a t e c o n c e r n i n g t h e r o l e o f ' p s y c h o l o g i c a l ' a n d ' e m o t i o n a l ' f a c t o r s i n t h e g e n e s i s and p e r s i s t e n c e o f t h e s ymp t oms a s s o c i a t e d w i t h t h e p a t h o l o g y . A l t h o u g h i t s e ems t h a t c l i n i c a l i n v e s t i g a t i o n s i n t o t h e a l l e r g i c , i n f e c t i o u s , g e n e t i c , n u t r i t i o n a l and i m m u n o l o g i c a l a s p e c t s o f u l c e r a t i v e c o l i t i s h a v e b e e n l a r g e l y u n c o n v i n c i n g i n t e r m s o f s u p p l y i n g e v i d e n c e o f t h e o r i g i n s o f t h e p a t h o l o g y , r e s e a r c h i n t o some o f t h e s e a r e a s c o n t i n u e s . A t t h e same t i m e , a ' p s y c h o s o m a t i c ' f r a m e o f r e f e r e n c e h a s c o n t i n u e d t o b e a c e n t r a l f o c u s o f a t t e n t i o n , a t t r a c t i n g s u p p o r t a n d s k e p t i c i s m f r o m r e s e a r c h e r s i n v a r i o u s c o u n t r i e s . T h e r e i s a n e x t e n s i v e l i t e r a t u r e o n t h e p s y c h o l o g i c a l a n d p s y c h o s o m a t i c a s p e c t s o f u l c e r a t i v e c o l i t i s . A l t h o u g h t h e r e a r e q u i t e a f e w p r o p o n e n t s o f t h e a r g u m e n t t h a t t h e p a t h o l o g y i s b o t h p r e c i p i t a t e d b y a n d r e l a t e d t o p s y c h o - p a t h o l o g i c a l a n d / o r n e u r o t i c s t a t e s , t h e w o r k o f M u r r a y ( 1 9 3 0 ) E n g e l ( 1 9 5 5 , 1 9 5 8 , 1 9 6 8 ) a n d K a r u s h ( 1 9 6 8 , 1 9 6 9 ) s eems t o o c c u r a n d b e c i t e d m o s t o f t e n i n t h e l i t e r a t u r e . T h e r e c o g n i z e d p i o n e e r o f t h i s a p p r o a c h wa s M u r r a y ( 1 9 3 0 ) who f o u n d t h a t t h e o n s e t o f s y m p t o m s was r e l a t e d , i n a t e m p o r a l s e n s e , t o t h e o u t b r e a k o f e m o t i o n a l d i s t u r b a n c e s , a n d t h a t m a r i t a l c o n f l i c t was b y f a r t h e m o s t common s o u r c e o f a p a t i e n t ' s a n x i e t y - s t a t e . I n E n g e l ' s w o r k , a n a r g u m e n t i s p u t f o r w a r d t h a t t h e r e a r e f o u r f a c t o r s w h i c h e m e r g e w i t h ' i m p r e s s i v e c o n s i s t e n c y ' i n h i s p a t i e n t s w i t h u l c e r a t i v e c o l i t i s : l o n g -s t a n d i n g p e r s o n a l i t y d e f e c t s , d e p e n d e n t r e l a t i o n s h i p s w i t h o t h e r p e o p l e , p s y c h o p a t h o l o g y i n t h e m o t h e r s o f h i s p a t i e n t s a n d a f a i l u r e t o a c h i e v e f u l l h e t e r o s e x u a l d e v e l o p m e n t . O f t h e s e f o u r f a c t o r s , t h e d e p e n d e n c y o n a 37 p a r t i c u l a r r e l a t i o n s h i p , and the extreme emotional reactions which occur when this dependency i s threatened, i s the most important one. Both i n terms of the f i r s t manifestation of the pathology, and i n subsequent exacerbations of the condition, the occurrence of the physical symptoms are, according to Engel, connected to the patient's f i x a t i o n on key figures i n t h e i r s o c i a l environment and, i n p a r t i c u l a r , to the actual, or threatened loss or separation from such relationships (Engel 1955, 1958, 1968). Psychological abnormalities and disorders far beyond the range of i n d i v i d u a l differences i n the average population were also claimed to be found by Wittkower (1938) in his patients' l i v e s before the onset of c o l i t i s , and, i n 28 of the 40 patients he studied, Wittkower argued that there was 'a clear-cut trauma, serious enough to be regarded as a p r e c i p i t a t i n g agent.' (1938:1358). One of the most extensive and systematic studies of u l c e r a t i v e c o l i t i s i n more recent years was undertaken by Karush and h i s associates (1968, 1969). In his i n v e s t i g a t i o n , Karush found that 14 of the 30 i n d i v i d u a l s who were scrutinized were 'schizophrenic', and the balance exhibited 'schizoid and paranoid' features. The emotional disturbance i n such i n d i v i d u a l s , perceived by Karush to be usually heightened by the loss of someone who 'symbolized dependency', was interpreted as both a p r e c i p i t a t i n g and continuing factor i n his patients' i l l n e s s careers. In c l i n i c a l experience, Karush's findings have been confirmed by Hertz and Rosenbaum (1977), who also followed Karush's recommendation that psychotherapeutic e f f o r t s combined with medical care a s s i s t i n patients' recovery. In discussing therapeutic intervention, however, Hertz and Rosenbaum o f f e r a caveat: they suggest that because patients often have no inner resources for coping with a confrontation with 38 ' u n c o n s c i o u s m o t i v e s ' , g r e a t r e s e r v a t i o n i s r e c o m m e n d e d i n t h e u s e o f i n t e r p r e t i v e t h e r a p y . I n t h e i r o p i n i o n , c a r e l e s s r e m a r k s d i r e c t e d t o t h e p a t i e n t , e v e n i f i n t e n d e d t o b e c o n s t r u c t i v e , ' c a n p r e c i p i t a t e e p i s o d e s o f p r o f u s e b l e e d i n g i n p s y c h o l o g i c a l l y h e l p l e s s p a t i e n t s ' . ( 1 9 7 7 : 2 5 6 ) . I n c i t i n g t h e c o n c o m i t a n c e o f s o m a t i c a n d p s y c h o l o g i c a l p a t h o l o g y i n 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 , O ' C o n n o r ( 1 9 7 0 ) a t t r i b u t e d t h e i m p r o v e m e n t s e e n i n p a t i e n t s s t u d i e d o v e r a n e i g h t y e a r p e r i o d t o t h e p s y c h o t h e r a p e u t i c t r e a t m e n t t h e y r e c e i v e d . T h i s c o n t r a s t e d w i t h no i m p r o v e m e n t i n a c o n t r o l g r o u p o f 4 0 o t h e r p a t i e n t s who h a d n o t r e c e i v e d s u c h t r e a t m e n t . The g a s t r o e n t e r o l o g i c a l i n t e r p r e t a t i o n : p s y c h o s o m a t i c e t i o l o g y r e f u t e d ? T h e i n t e r p r e t a t i o n o f u l c e r a t i v e c o l i t i s a s a p a t h o l o g y w i t h a d i s t i n c t i v e l y p s y c h o l o g i c a l o r e m o t i o n a l c o m p o n e n t , o r a s a f o r m o f i l l n e s s w h i c h c o u l d b e c o n s i d e r e d ' p s y c h o s o m a t i c ' , h o w e v e r , i s n o t a n i n t e r p r e t a t i o n s h a r e d b y a l l o b s e r v e r s a n d r e s e a r c h e r s . T h e r e f u s a l t o a c c e p t a n e t i o l o g i c a l e x p l a n a t i o n b a s e d u p o n e m o t i o n a l o r p s y c h o p a t h o l o g i c a l f a c t o r s , o r , a t m o s t , t o v i e w i t a s u n p r o v e d , i s r e v e a l e d i n t h e c o n c l u s i o n s o f r e s e a r c h s t u d i e s a n d r e v i e w s o f t h e s u b j e c t . On t h e w h o l e , a s F e l d m a n ( 1 9 6 7 ) p o i n t s o u t , t h e d i v i s i o n o f o p i n i o n o n t h e m a t t e r c o r r e s p o n d s t o a d i v i s i o n i n t h e r a n k s o f m e d i c a l p r a c t i t i o n e r s : f o r p s y c h i a t r i s t s , t h e p a t h o l o g y i s u n q u e s t i o n a b l y c o n n e c t e d t o e m o t i o n a l d i s t u r b a n c e , t o t h e p o i n t w h e r e s u c h a s t a t e i s a l m o s t a p r e c o n d i t i o n f o r t h e p h y s i c a l s y m p t o m s , w h i l s t m o s t g a s t r o e n t e r o l o g i s t s ( a n d s u r g e o n s ) b e l i e v e t h a t t h e a r g u m e n t c a n n o t be s u p p o r t e d a n d t h a t t h e c a u s e s f o r t h e p a t h o l o g y a r e n o t y e t k n o w n . R e s e a r c h e r s a n d r e v i e w e r s who d i s c o u n t t h e r o l e o f e m o t i o n a l o r 39 p s y c h o p a t h o l o g i c a l f a c t o r s i n t h e e t i o l o g y o f u l c e r a t i v e c o l i t i s d o s o o n s e v e r a l g r o u n d s . T h e s e i n c l u d e a s s e r t i o n s t h a t i n d i v i d u a l s who h a v e t h e p a t h o l o g y d o n o t s h o w a n y m a r k e d d i f f e r e n c e s i n t e r m s o f s o c i a l a t t r i b u t e s o r l i f e - s t y l e f r o m t h e m o r e g e n e r a l p o p u l a t i o n , t h a t t h e r e s p o n s e s i n t e r m s o f e m o t i o n a l i t y o r e x h i b i t e d s t r e s s t o w a r d s l i f e - e v e n t s a r e n o t d i s t i n c t i v e l y m a r k e d , t h a t t h e r e a r e , i n f a c t , n o u n i q u e p e r s o n a l i t y t r a i t s i n p e o p l e who d e v e l o p u l c e r a t i v e c o l i t i s w h i c h w o u l d s u p p o r t t h e a r g u m e n t t h a t t h e c o n d i t i o n i s p s y c h o g e n i c . T h e a r g u m e n t i s a l s o made t h a t s t u d i e s w h i c h do a d v a n c e a p s y c h o g e n i c e t i o l o g y a r e d e f i c i e n t i n t e r m s o f m e t h o d o l o g y a n d e v a l u a t i o n p r o c e d u r e s a n d t h a t i t c a n n o t b e e s t a b l i s h e d p r e c i s e l y how a t t i t u d i n a l o r p s y c h o l o g i c a l f a c t o r s c a n b e t r a n s l a t e d o r t r a n s p o s e d i n t o t h e p h y s i c a l s y m p t o m s . T h i s g e n e r a l u n w i l l i n g n e s s t o c r e d i t p s y c h o - o r s o c i o p a t h o l o g i c a l v a r i a b l e s a s a n t e c e d e n t s o r p r e c i p i t a n t s i s o f t e n l o g i c a l l y a s s o c i a t e d w i t h a c r i t i q u e o f p s y c h i a t r i c o r p s y c h o a n a l y t i c a l i n t e r v e n t i o n a s an a p p r o p r i a t e f o r m o f t r e a t m e n t . T h u s , i n a l a r g e s c a l e s t u d y i n B a l t i m o r e , i n v o l v i n g 2 27 p a t i e n t s w i t h IBD ( b o t h u l c e r a t i v e c o l i t i s a n d C r o h n ' s d i s e a s e ) M e n d e l o f f a n d h i s a s s o c i a t e s ( 1 9 7 0 ) d e c l a r e d t h a t t h e f r e q u e n c y w i t h w h i c h s t r e s s f u l e x p e r i e n c e s r e l a t i n g r e s i d e n t i a l r e - l o c a t i o n , w o r k a n d o t h e r a s p e c t s o f l i v i n g , and t h e p a t i e n t s ' r e a c t i o n s t o t h o s e e x p e r i e n c e s , a r e n o t d i f f e r e n t f r o m t h e e x p e r i e n c e s o f i n d i v i d u a l s who w e r e l i v i n g a t home a n d c o n s i d e r e d t o be h e a l t h y c i t i z e n s . Q u e s t i o n s r e g a r d i n g e t h n i c b a c k g r o u n d , b i r t h o r d e r , w o r k e x p e r i e n c e , m a r i t a l h i s t o r y , e t c . w e r e a s k e d o f t h e I B D g r o u p a n d o f 735 a d u l t s r e p r e s e n t i n g t h e g e n e r a l p o p u l a t i o n c o n t r o l g r o u p . A l t h o u g h M e n d e l o f f a c k n o w l e d g e s t h a t t h e i n t e r v i e w p r e c e d u r e s a n d s o c i a l s u r v e y a p p r o a c h d i d n o t 4 0 r e v e a l ' t h e m e a n i n g f u l n e s s o f s u c h e v e n t s t o t h e s u b j e c t ' , h e c o n c l u d e s t h a t t h e c r i t e r i a r e g a r d i n g s o c i a l c h a r a c t e r i s t i c s w h i c h w e r e e m p l o y e d p r o v i d e d s u f f i c i e n t e v i d e n c e t o s h o w t h a t I BD s u f f e r e r s w e r e n o m o r e e x p o s e d t o s t r e s s f u l e v e n t s t h a t t h e n o r m a l c i t i z e n r y . I n a l a r g e s t u d y i n N o r w a y , 2 0 0 p a t i e n t s w i t h u l c e r a t i v e c o l i t i s w e r e c o m p a r e d w i t h a c o n t r o l g r o u p ( d r a w n f r o m t h e h e a l t h y p o p u l a t i o n ) and e x a m i n e d i n t e r m s o f t h e f r e q u e n c y o f d i v o r c e , p s y c h o s i s , h o s p i t a l i z a t i o n f o r m e n t a l d i s o r d e r s a n d d r u g c o n s u m p t i o n . F r o m t h i s s t u d y , G r u n e c ( 1 9 7 8 : 3 7 - 3 9 ) c o n c l u d e d t h a t t h e r e was no e v i d e n c e t h a t u l c e r a t i v e c o l i t i s i s o f p s y c h o s o m a t i c o r i g i n o r t h a t t h e r e i s a n a b n o r m a l b e h a v i o u r a l p a t t e r n i n u l c e r a t i v e c o l i t i s . I n r e s e a r c h d o n e i n E n g l a n d , i n v o l v i n g o v e r 4 0 0 p a t i e n t s w i t h u l c e r a t i v e c o l i t i s , o n l y 14% o f t h o s e i n t e r v i e w e d w e r e a b l e t o f i n d a c o n n e c t i o n b e t w e e n i d e n t i f i a b l e e m o t i o n a l f a c t o r s i n t h e i r l i v e s and t h e o n s e t o r c o u r s e o f t h e i r p h y s i c a l s y m p t o m s . A s S h i e l d s ( 1 9 7 3 : 8 5 ) p o i n t s o u t , t h i s p a r t i c u l a r s t u d y b y G o l i g h e r e t . a l . ( 1 9 6 8 ) may h a v e b e e n r a t h e r s u p e r f i c i a l i n t e r m s o f p s y c h o l o g i c a l a s s e s s m e n t , b u t t h e r e a r e o t h e r w e l l - c o n t r o l l e d s t u d i e s e m p l o y i n g v a l i d a t e d p s y c h i a t r i c m e t h o d o l o g y w h i c h h a v e a l s o f a i l e d t o d e m o n s t r a t e a n y m a r k e d d i f f e r e n c e s i n t h e p e r s o n a l i t y o f t h o s e w i t h u l c e r a t i v e c o l i t i s c o m p a r e d w i t h h e a l t h y s u b j e c t s . T h e m o s t w e l l - k n o w n o f t h e s e i s t h e w o r k o f F e l d m a n e t . a l . ( 1 9 6 7 ) i n w h i c h t h i r t y - f o u r p a t i e n t s w i t h u l c e r a t i v e c o l i t i s and t w o c o n t r o l g r o u p s w e r e i n v o l v e d . E a c h p a t i e n t h a d t w o s t a n d a r d p s y c h i a t r i c i n t e r v i e w s o f t h e f r e e - a s s o c i a t i o n t y p e and was a l s o i n t e r v i e w e d a t l e n g t h s o a s t o y i e l d d a t a f o r s c o r i n g 6 5 v a r i a b l e s c o n s i d e r e d s a l i e n t f o r p e r s o n a l i t y e v a l u a t i o n . T h e p s y c h i a t r i c e v a l u a t i o n t o o k i n t o c o n s i d e r a t i o n a w i d e r a n g e o f v a r i a b l e s , i n c l u d i n g c o g n i t i o n , ego 4 1 strengths, defensiveness, dependence, external problems, attitu d e towards i l l n e s s , past h i s t o r y , anxiety, depression, parents, s i b l i n g and so on, and the responses were scored on the basis of a complex a n a l y t i c a l formula i n order to determine a designation of 'normality or 'abnormality'. The average length of time spent i n the interviewing and consultative process with each patient was ten hours. Twenty-nine of the patients were regarded as e s s e n t i a l l y 'normal' and f i v e as 'abnormal'. The f i v e abnormal personality types were afforded diagnosis i n terms of character disorders to a s i g n i f i c a n t degree including designations such as being i n f a n t i l e , passive, schizoid and dependent. Fourteen of those patients c l a s s i f i e d as 'normal' also were thought to be p e r s o n a l i t i e s with passive-dependent, passive-aggressive, or anxious c h a r a c t e r i s t i c s . Feldman concluded that the cases studies did not c o n s i s t e n t l y show the presence of important p r e c i p i t a t i n g factors of a psychological kind for the pathology, or any signs of 'extreme stre s s ' i n the case of 3 3 of the 3 4 patients i n the f i v e years preceding onset of the i l l n e s s , although i n 9 cases there was a 'moderate' to 'moderately severe' degree of stress present before a relapse. Further, although there were 1 4 cases i n which the background of the patient's l i f e was such as to suggest the ' p o s s i b i l i t y of emotional c o n f l i c t ' which 'might be expressed i n somatic i l l n e s s ' , Feldman could f i n d no evidence to support Engel's proposal that u l c e r a t i v e c o l i t i s patients had c h a r a c t e r i s t i c attitudes of helplessness, except i n the sense of those attitudes being a response to the i l l n e s s i t s e l f . Feldman also concluded that of the seven patients who had received extensive p s y c h i a t r i c treatment, the indications were that although this treatment has aided the patients to adjust to the 42 d i s e a s e , i n n o c a s e h a d i t h a d a n a p p r e c i a b l e e f f e c t o n t h e c o u r s e o f t h e i l l n e s s . A s a r e s u l t o f t h i s e n q u i r y , F e l d m a n c o n c l u d e d t h a t i t i s q u e s t i o n a b l e w h e t h e r u l c e r a t i v e c o l i t i s c o u l d p r o p e r l y b e t h o u g h t o f a s a ' p s y c h o s o m a t i c ' d i s e a s e . ( 1 9 6 7 : 1 7 ) R e c o n c i l i a t i o n o f p e r s p e c t i v e s : I l l n e s s i s s t r e s s f u l I n a r e v i e w o f t h e q u e s t i o n o f u l c e r a t i v e c o l i t i s a s a p a t h o l o g y t o b e c o n s i d e r e d p s y c h o s o m a t i c , o r p s y c h o g e n i c , S h i e l d s ( 1 9 7 3 ) o f f e r s a t h e s i s w h i c h i s a c c e p t e d b y m o s t o b s e r v e r s a n d p r a c t i t i o n e r s - t h a t p a t i e n t s do i n d e e d s u f f e r e m o t i o n a l t r a u m a , b u t t h a t t h i s i s a n e f f e c t , r a t h e r t h a n a c a u s e o f t h e p a t h o l o g y . H e r e , t h e r e i s a g r e e m e n t b e t w e e n t h e t w o s c h o o l s o t h o u g h t , r e p r e s e n t e d r o u g h l y b y p s y c h i a t r i s t s a n d g a s t r o e n t e r o l o g i s t s . I t i a r g u e d t h a t t h e r e i s c o n s i d e r a b l e s t r e s s a s s o c i a t e d w i t h d e a l i n g w i t h t h e s ymp t oms a n d e v e n m o r e s e v e r e s t r e s s a s s o c i a t e d w i t h t h e e x p e r i e n c e o f s u r g e r y . T h u s , i n r e v i e w i n g E n g e l ' s f i n d i n g s , S h i e l d s w r i t e s : -" N o o n e 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 p r o b l e m s i n t h e p a t i e n t w i t h s e v e r e u l c e r a t i v e c o l i t i s . T h e s e p a t i e n t s a r e o f t e n d e p r e s s e d , i r r i t a b l e , a n x i o u s a n d 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 n o t b e i n t h i s s t a t e i f t h e y p a s s e d t e n t o f i f t e e n b l o o d - s t a i n e d b o w e l m o t i o n s a d a y - o f t e n a c c o m p a n i e d b y t e n e s m u s - a n d c o u l d n o t v e n t u r e v e r y f a r f r o m t h e n e a r e s t l a v a t o r y ? T h e s y m p t o m s o f t h i s d i s e a s e c a n w e a r down t h e m o s t s t a l w a r t p a t i e n t a n d p r o d u c e i n h i m e x t r e m e i n t r o v e r s i o n a n d a n x i e t y . T h e s e c h a n g e s a r e s u r e l y t h e c o n s e q u e n c e o f t h e d i s e a s e r a t h e r t h a n i t s c a u s e " ( 1 9 7 3 : 8 5 ) . When t h e s y m p t o m s o f u l c e r a t i v e c o l i t i s do n o t r e s p o n d t o c h e m o t h e r a p e u t i c t r e a t m e n t , t h e d e c i s i o n t o r e s o r t t o s u r g e r y i s m a d e . S e v e r a l w r i t e r s r e f e t o t h e ' o p e r a t i v e p s y c h o s i s ' w h i c h o c c u r s a t t h i s t i m e , and o f t h e 4 3 a p p r o p r i a t e n e s s o f p s y c h o t h e r a p e u t i c o r p s y c h i a t r i c i n t e r v e n t i o n i n h e l p i n g p r e - a n d p o s t - o p e r a t i v e p a t i e n t s r e c o n c i l e t h e m s e l v e s t o t h e s u r g e r y . A s S h i e l d s a r g u e s , " 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 t r e a t -m e n t h a s f a i l e d ) t h e m o s t s u c c e s s f u l p r o c e d u r e i s 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 a n d i t s d e b i l i t a t i n g e f f e c t s r e m o v e d . T h i s r a d i c a l o p e r a t i o n r e q u i r e s t h e f o r m a t i o n o f a n i l e o s t o m y a n d i t w o u l d n o t v b e 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 b o d y i m a g e a n d 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 . r e . e x c r e t i o n ? ) d i d n o t i n d u c e e m o t i o n a l p r o b l e m s t h e r e a f t e r " ( 1 9 7 3 : 8 7 ) . O ' C o n n o r ( 1 9 7 0 ) f o u n d t h a t i n a g r o u p o f p a t i e n t s w h i c h h e a n d h i s a s s o c i a t e s s t u d i e d , a n d i n w h i c h 52% h a d a l s o b e e n d i a g n o s e d a s s c h i z o p h r e n i c , t h e l a t t e r p a t i e n t s b e c a m e ' g r o s s l y p s y c h o t i c ' a t t h e t i m e o f t h e i r c o l e c t o m y , e i t h e r j u s t b e f o r e t h e o p e r a t i o n o r i m m e d i a t e l y a f t e r w a r d s . H o w e v e r , i t a l s o a p p e a r e d t o b e t h e c a s e t h a t a f t e r some t i m e , t h e t r a u m a t i c e f f e c t s o f s u r g e r y s u b s i d e . A l s o , w i t h o u t t h e s y m p t o m s o f d i a r r h o e a t o d e a l w i t h a n y m o r e , p o s t - o p e r a t i v e p a t i e n t s i n t h i s c a t e g o r y s e emed t o e x h i b i t g e n e r a l i m p r o v e m e n t w i t h r e g a r d t o t h e i r p s y c h o s e s . I t wa s made c l e a r i n a l l t h e r e p o r t s w h i c h I r e a d , h o w e v e r , t h a t t h e i n t e r v e n t i o n o f p s y c h o t h e r a p i s t s , e v e n i n d e a l i n g w i t h t h e u n i v e r s a l l y a c c e p t e d p o s s i b i l i t i e s o f e m o t i o n a l c r i s e s a c c o m p a n y i n g s u r g e r y , s h o u l d n o t b e p r e - e m p t i v e o f t h e t e a m a p p r o a c h t o t r e a t m e n t , w h i c h m u s t i n v o l v e t h e c o m b i n e d s k i l l s o f t h e s u r g e o n a n d t h e p h y s i c i a n . C l e a r l y , t h e t h e r a p e u t i c r o l e a s s i g n e d t o p s y c h o t h e r a p y v a r i e d a c c o r d i n g t o t h e d e g r e e t o w h i c h p s y c h o p a t h o l o g i c a l f a c t o r s w e r e t h o u g h t t o b e p a r t o f t h e e t i o l o g i c a l p i c t u r e . F o r some w r i t e r s ( S h i e l d s 1 9 7 3 : 8 9 ) p s y c h i a t r y ' h a s n o t y e t 4 4 e s t a b l i s h e d i t s r i g h t t o b e p r e s e n t i n t h e t r e a t m e n t s c h e d u l e 1 , w h i l s t f o r o t h e r s ( H e r t z a n d R o s e n b a u m 1 9 7 7 ) t h e p s y c h i a t r i s t h a s a r e s p o n s i b i l i t y i n t h e m a n a g e m e n t o f t h e f a m i l y p h y s i c i a n ' s p a t i e n t . B u t e v e n f o r t h e m o s t s y m p a t h e t i c a d h e r e n t t o t h e p s y c h o s o m a t i c i n t e r p r e t a t i o n o f u l c e r a t i v e c o l i t i s , t h e p s y c h o t h e r a p e u t i c f o r m o f i n t e r v e n t i o n l a c k s t h e c a p a c i t y t o b r i n g a b o u t a c u r e o f t h e p h y s i c a l s ymp t oms ( W e i n e r 1 9 7 7 : 4 6 ) . C r o h n ' s d i s e a s e : a s e p a r a t e i s s u e ? A l t h o u g h C r o h n ' s d i s e a s e ( o r r e g i o n a l i l e i t i s ) i s c o n s i d e r e d t o b e i n t h e same g e n e r a l m e d i c a l c a t e g o r y a s u l c e r a t i v e c o l i t i s , i n s o f a r a s i t i s a c o n d i t i o n i n v o l v i n g t h e i n f l a m m a t i o n o f t h e b o w e l , t h e r e a r e s e v e r a l r e a s o n s why C r o h n ' s d i s e a s e i s a f f o r d e d a s e p a r a t e d i a g n o s t i c l a b e l . T h e s e i n c l u d e t h e f a c t t h a t t h e c h a n g e s w h i c h t a k e p l a c e i n t e r m s o f t h e t i s s u e o f t h e i n t e s t i n a l w a l l a r e d i f f e r e n t f r o m t h o s e o c c u r r i n g i n u l c e r a t i v e c o l i t i s and t h a t t h e s e c h a n g e s c a n a l s o o c c u r i n o t h e r p a r t s o f t h e b o d y . I t i s r a r e t h a t i n f l a m m a t i o n i s r e s t r i c t e d s o l e l y t o t h e c o l o n . C l i n i c a l l y , h o w e v e r , i t i s u s u a l l y o b s e r v e d a s a d i a r r h e a l d i s e a s e , a s s o c i a t e d s o m e t i m e s w i t h f e v e r a n d b l e e d i n g . I t i s s t i l l c o n s i d e r e d t o b e a d i s e a s e o f u n k n o w n o r i g i n and no ' m e d i c a l n a t u r a l h i s t o r y ' o f i t a s a d i s e a s e e n t i t y h a s b e e n e s t a b l i s h e d s i n c e i t was f i r s t d e s c r i b e d b y a D r . C r o h n i n 1 9 3 2 . I n t h e m o s t c o m p r e h e n s i v e r e v i e w o f t h e r e s e a r c h u n d e r t a k e n i n t o C r o h n ' s d i s e a s e t h a t I c o u l d f i n d ( J a n o w i t z a n d S a c h a r 1 9 7 6 ) t h e g e n e r a l c o n c l u s i o n i s t h a t t h e i n v e s t i g a t i o n s i n t o t h e t h r e e m o s t l i k e l y a v e n u e s o f p a t h o g e n e s i s , n a m e l y a u t o i m m u n i t y , c e l l u l a r immune d e f i c i e n c y a n d t r a n s m i s s i b l e i n f e c t i o n , h a v e n o t y i e l d e d a n y p e r s u a s i v e e v i d e n c e t h a t a n e t i o l o g i c a g e n t c a n b e i d e n t i f i e d . I n a n ' a f t e r w o r d ' t o t h i s e x t e n s i v e l y -45 r e f e r e n c e d a r t i c l e , t h e a u t h o r s r e f l e c t o n t h e m y s t e r i o u s c h a r a c t e r o f C r o h n ' s d i s e a s e , p a r t i c u l a r l y w i t h r e s p e c t t o a n a b s e n c e o f a n y d i s c u s s i o n o f t h e s y m p t o m a t o l o g y d u r i n g t h e n i n e t e e n t h c e n t u r y a n d o n t h e f a c t t h a t s i n c e i t s r e c o g n i t i o n a s a d i a g n o s t i c e n t i t y , a l l e f f o r t s h a v e f a i l e d t o f i n d t h e c a u s e a n d c u r e o f t h e p a t h o l o g y . W i t h r e g a r d t o t h e f i r s t q u e s t i o n , t h e c o n c l u s i o n i s t h a t w h a t i s b e i n g w i t n e s s e d i s t h e d e v e l o p m e n t and e v o l u t i o n o f a n e n t i r e l y new d i s e a s e , w h i c h m i g h t w e l l b e p r e c i p i t a t i n g a d e v a s t a t i n g e p i d e m i c , a s a t l e a s t o n e e m i n e n t a u t h o r i t y h a s e n v i s a g e d . I n s o f a r a s t h e f a i l u r e o f m e d i c a l r e s e a r c h i s c o n c e r n e d , t h e a u t h o r s c o n s o l e t h e m s e l v e s w i t h t h e c o m p a r a t i v e h i s t o r y o f s y p h i l i s a n d l e p r o s y , d i s e a s e s w h i c h e x i s t e d f o r many c e n t u r i e s b e f o r e t h e y w e r e e x p l a i n e d a n d s u c c e s s f u l l y t r e a t e d . U n l i k e u l c e r a t i v e c o l i t i s , t h e f o r m o f I B D k n o w n a s C r o h n ' s d i s e a s e h a s n o t b e e n a f f o r d e d a t t e n t i o n o r i n t e r p r e t a t i o n a s a p s y c h o s o m a t i c p a t h o l o g y . H o w e v e r , a s r e p o r t e d b y H e r t z and R o s e n b a u m ( 1 9 7 7 : 2 5 3 ) a c o m p a r a t i v e s t u d y o f p a t i e n t s w i t h e i t h e r u l c e r a t i v e c o l i t i s o r C r o h n ' s d i s e a s e r e v e a l e d n o d i f f e r e n c e s b e t w e e n t h e m i n t e r m s o f t h e h i g h i n c i d e n c e o f e m o t i o n a l d i s t u r b a n c e a n d l i f e c r i s e s p r i o r t o t h e o n s e t o f t h e i l l n e s s ( M c K e g n e y e t . a l . 1 9 7 0 ) . A t t h i s s t a g e o f my r e s e a r c h , w i t h w h a t s e emed t o b e a n o v e r v i e w o f t h e b i o l o g i c a l a n d p s y c h o l o g i c a l a s s e s s m e n t s o f I B D i n h a n d , t h e p r o b l e m o f e s t a b l i s h i n g a n i n t e l l i g i b l e a n d / o r c o n v i n c i n g a n s w e r t o t h e q u e s t i o n o f p a t h o g e n e s i s wa s c o m p o u n d e d b y my f r u s t r a t i o n w i t h t h e a p p a r e n t l y l i m i t e d p e r s p e c t i v e s a n d f r a m e w o r k o f r e f e r e n c e o f t h e s e i n t e r p r e t a t i o n s . A w i d e r c o n t e x t : t h e p r o m i s e o f e p i d e m i o l o g y So f a r , I h a d l o o k e d i n v a i n f o r i n f o r m a t i o n w h i c h w o u l d l o c a t e t h e 46 h i s t o r y o f i n c i d e n c e a n d s u s c e p t i b i l i t y o f I B D i n a s o c i o - c u l t u r a l c o n t e x t , w h e r e i t m i g h t c o n c e i v a b l y b e u n d e r s t o o d a s t h e m a n i f e s t a t i o n o f some r e s p o n s e t o c h a n g i n g human c i r c u m s t a n c e s . I n t h i s r e s p e c t , t h e e p i d e m i o l o g i c a l d a t a o n t h e s y n d r o m e s e emed t o p r o m i s e a p a r t i a l a n s w e r t o t h i s q u e s t i o n . I B D a p p e a r s a s a c o n d i t i o n o c c u r r i n g e x c l u s i v e l y i n m o d e r n i n d u s t r i a l i z e d s o c i e t i e s , w h i c h c o u l d a l s o b e i d e n t i f i e d a s s o c i e t i e s i n w h i c h W e s t e r n m e d i c a l s c i e n c e i s p r e v a l e n t . I t a l s o a p p e a r s a s a s y n d r o m e r e p o r t e d w i t h i n c r e a s i n g f r e q u e n c y w i t h i n t h e 2 0 t h c e n t u r y , a n d , i n t h e c a s e o f C r o h n ' s d i s e a s e , w i t h i n t h e l a s t 50 y e a r s . A l t h o u g h t h e r e a r e some d i f f e r e n c e s b e t w e e n t h e e p i d e m i o l o g i c a l p a t t e r n s o f t h e two d i s e a s e e n t i t i e s , t h e p a t t e r n o f i n c i d e n c e s u g g e s t s d r a m a t i c i n c r e a s e s i n r e c e n t y e a r s , s u g g e s t i n g t h a t i n t h e c a s e o f u l c e r a t i v e c o l i t i s a t l e a s t o n e p e r s o n i n 1 0 , 0 0 0 o f t h e p o p u l a t i o n i s a f f e c t e d a n d i n t h e c a s e o f C r o h n ' s d i s e a s e , o n e p e r s o n i n 1 8 , 0 0 0 . When m e a s u r e s o f ' e t h n i c i t y ' a r e e m p l o y e d , r e s e a r c h s t u d i e s h a v e c o n c l u d e d t h a t i n t h e USA t h e r e i s a h i g h e r p r e d i l e c t i o n f o r b o t h p a t h o l o g i e s i n some g r o u p s t h a n i n o t h e r s . M o s t A m e r i c a n s t u d i e s , f o r e x a m p l e , h a v e s h o w n a f o u r - t o s i x - f o l d p r o c l i v i t y f o r C r o h n ' s d e s e a s e among s u b - p o p u l a t i o n s r e f e r r e d t o a s J e w s , a n d b y c o n t r a s t , a much l o w e r i n c i d e n c e among b l a c k p e o p l e , A m e r i c a n I n d i a n s a n d S p a n i s h A m e r i c a n s t h a n i n t h e g e n e r a l p o p u l a t i o n a s a w h o l e . E p i d e m i o l o g i c a l r e p o r t s a l s o i n d i c a t e t h a t I B D i s o f t e n f o u n d i n membe r s o f t h e same f a m i l y a n d i n t h e i r d e s c e n d a n t s and m o r e o f t e n t h a n m i g h t b e e x p e c t e d o n t h e b a s i s o f r a n d o m d i s t r i b u t i o n . T h i s i s p a r t i c u l a r l y t r u e i n t h e c a s e o f J e w i s h f a m i l i e s . T h e s y n d r o m e h a s a p e a k i n c i d e n c e o f o n s e t among y o u n g p e o p l e , w i t h 60% o f a l l c a s e s o f C r o h n ' s , f o r e x a m p l e , o c c u r r i n g b e t w e e n t h e a g e s o f t e n a n d t w e n t y - f i v e . D e s p i t e t h e f a c t 47 that the s o c i o l o g i c a l indices which are employed in the epidemiological research which I encountered are c l e a r l y over-generalized and rather unsophisticated i n t h e i r terms of reference, there did appear to be v a r i a b i l i t y i n s u s c e p t i b i l i t y which was not explained through genetic f a c t o r s . The best that could be said was that there did seem grounds to suggest that membership in c e r t a i n s o c i o - c u l t u r a l categories, and, by extension, adherence to p a r t i c u l a r s t y l e s of l i f e , modes of b e l i e f or action, had a c r i t i c a l r o l e to play in the disease process.^ With t h i s epidemiological information, which seemed, as with my other findings in the l i t e r a t u r e to r a i s e even more questions than answers as to the nature of the syndrome, the general e f f o r t s at explanation assumed a t r i p a r t i t e character, with reference to issues e x i s t i n g at the b i o l o g i c a l , psychological and s o c i o c u l t u r a l l e v e l . But at each l e v e l , there was either dispute or ambiguity surrounding 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 explanatory p o t e n t i a l or a range of v a r i a b l e s . It was not altogether clear, for example, when symptomatology indicated a diagnosis for either u l c e r a t i v e c o l i t i s or Crohn's disease: how or why stress played a r o l e i n either of these designated categories of IBD: or what s i g n i f i c a n c e there was to be found i n the pattern of s u s c e p t i b i l i t y . In terms of diagnosis and treatment, a c r i t i c a l d ifference appeared in the importance given to one or the other of the two major reference points, mind and body, and the epidemiological issues were not incorporated into the explanatory model at a l l . The question which was outstanding now, was how t h i s pot-pourri of representations was assembled and acted upon, and how many of them were cogent, in the much more concrete world of everyday l i f e . In the next chapter, I review the issue of 48 methodology against a background of anthropological assumptions and the l o c a l context i n which I was to meet some po t e n t i a l informants. 4 9 FOOTNOTES TO CHAPTER I I 1 . I n t h e U n i t e d S t a t e s , w h e r e e t h n i c d i f f e r e n c e s w e r e e m p h a s i z e d , t h e f o l l o w i n g s t u d i e s a r e r e l e v a n t : -A c h e s o n , E . D . , ' T h e 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 U n i t e d S t a t e s v e t e r a n s w i t h p a r t i c u l a r r e f e r e n c e t o t h e J e w i s h r e l i g i o n ' , G u t 1 : 2 9 1 - 9 3 1 9 6 0 . C u f l e y , G . A . , G r e g o r y , D . H . , D a n e m a n n , H . , a n d L a w , D . H . , ' C r o h n ' s d i s e a s e , 1 9 6 1 - 1 9 7 1 : a n 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 ' , Am . J . D i g . D i s 1 7 : 9 5 4 - 5 5 , 1 9 7 2 . M e n d e l o f f , A . I . , a n d D u n n , 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 a n d 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 . H a r v a r d U n i v e r s i t y P r e s s , 1 9 7 1 : 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 L i l i e n f e l d , A . , ' A n e p i d e m i o l o g i c a l s t u d y o f u l c e r a t i v e c o l i t i s a n d 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 5 3 : 1 9 8 - 2 1 0 . 1 9 6 7 : R a p p a p o r t , H . , B u r g o y n e , F . H . , a n d S m e t a n a , H . F . ' T h e p a t h o l o g y o f r e g i o n a l e n t e r i t i s ' M i l . S u r g . 1 0 9 : 4 6 3 - 5 0 2 , 1 9 5 1 : R o g e r s , B . H . G . , C l a r k , L . M . , K i r s n e r , J . B . , ' T h e e p i d e m i o l o g i c a n d 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 i n f l a m m a t o r y b o w e l d i s e a s e : a n 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 1 4 0 0 p a t i e n t s ' . J o u r n a l C h r o n . D i s . 2 4 : 7 4 3 - 7 3 , 1 9 7 1 . I n E u r o p e , w h e r e d e m o g r a p h i c f a c t o r s a r e p e r t i n e n t : - ( S w e d e n ) N o r l e n , B . J . , K r a u s e , U . , a n d B e r g m a n , L . , ' A n E p i d e m i o l o g i c a l s t u d y o f C r o h n ' s d i s e a s e " S c a n d . J . G a s t r o e n t e r o l 5 : 3 8 5 - 9 0 , 1 9 7 0 : K r a u s e , U . , ' E p i d e m i o l o g y i n S w e d e n ' i n R e g i o n a l  E n t e r i t i s ( C r o h n ' s D i s e a s e ) S k a n d i a I n t . S ymp . S t o c k h o l m : N o r d d i s k a B o k h a n d e l a n s 1 9 7 1 : 1 4 2 - 1 5 1 . ( N o r w a y ) M y r e n , J . e t . a l . ' E p i d e m i o l o g y o f 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 . S u r g 5 2 : 2 1 5 - 1 7 , 1 9 6 5 . ( E n g l a n d ) E v a n s , J . G . , a n d A c h e s o n , E . D . , ' A n e p i d e m i o l o g i c a l s t u d y o f u l c e r a t i v e c o l i t i s a n d 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 ' G u t 6 : 3 1 1 - 3 2 4 , 1 9 6 5 . 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 i n 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 a n d u l c e r a t i v e c o l i t i s o v e r t h e p e r i o d 1 9 7 0 - 1 9 7 7 , t h e l a s t y e a r f o r w h i c h f i g u r e s a r e a v a i l a b l e . T h e r e 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 i n c r e a s i n g , w i t h 1 977 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 . T h e 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 , a g e d 2 5 - 4 4 y e a r s . S e e t a b l e o f d a t a , D i v i s i o n o f V i t a l S t a t i s t i c s , M i n i s t r y o f H e a l t h , P r o v i n c e o f B r i t i s h C o l u m b i a . ( A p p e n d i x i i i ) 5 0 CHAPTER III E s t a b l i s h i n g a Methodology and Finding Informants 51 Introduct ion I do not wish to pretend that my l i b r a r y research was comprehensive enough not to have overlooked some interpretations which might have resulted in my research taking a d i f f e r e n t course. But the overwhelming sense that my i n v e s t i g a t i o n of the l i t e r a t u r e gave me was of the commitment, by observers of the sufferance of t h i s p a r t i c u l a r kind of sickness, to models of i n t e r p r e t a t i o n based upon imposed structures of meaning. The abstractive nature of the concepts employed, whether i n the domains of biomedicine, psychiatry or epidemiology seemed to have l i t t l e claim to phenomenal r e a l i t y . Moving through the l e v e l s of evidence, these abstractive concepts deal in turn with the body, the mind and s o c i a l a f f i l i a t i o n . But how to sum the properties defined i n the r e g u l a r i t i e s observed? The caricature which emerges i s that the ' t y p i c a l ' sufferer has a weak physical c o n s t i t u t i o n , is dependent or somewhat psychopathic and i s probably Jewish or Protestant. Rather despairingly, I began to come to the conclusion that even i f this caricature was grotesque, i t was, nevertheless, pointing to some r e g u l a r i t i e s in the phenomena which the observers evidently perceived as data. What seemed at f a u l t , was the employment of c e r t a i n discriminatory axioms, which, because of a p a r t i c u l a r preoccupation with the object-subject r e l a t i o n s h i p , tended to celebrate elements i n the observer's view of the world which were exact and appropriate to s c i e n t i f i c discourse and met the p o s i t i v i s t c r i t e r i a of experimental v e r i f i c a t i o n and r e p l i c a b i l i t y . And here I am underscoring the use of a p r i o r i t y p i f i c a t i o n s , which, with the possible exception of some of the psychoanalytical 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 of any elaboration of the processes by which they occurred. Neither were they linked to other aspects which would enmesh them in nature or culture. For example, even though the observational f i e l d of biomedicine, in dealing with metabolism, involves s p e c i a l i z e d knowledge of phenomena which is s u b s t a n t i a l l y r e a l , as compared with the often ethereal nature of c u l t u r a l products, the s e l e c t i v i t y i n the perception of what constitutes the pathology is subject to these same general points of c r i t i c i s m . Why, for instance, i s the model of the pathology r e s t r i c t e d to malfunctioning v i s c e r a , with no manifested suggestion of linkages to the autonomic nervous system? Why does the model not capture, i n at least some truncated form, a sense of the interdependency of the process of bodily functioning? S i m i l a r l y , the p s y c h i a t r i c 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 thought to the s o c i a l and 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, nor p a r t i c u l a r l y to the r e f l e x i v e process by which the i n d i v i d u a l arrived at some supposedly c r i t i c a l emotional state. Nor i s there, i n t h i s general area of i n v e s t i g a t i o n , any clear c r i t e r i o n as to the standard of normality from which the i n d i v i d u a l can be considered deviant i n precise ways. Again, i n epidemiology, the objective s o c i a l status t y p i f i c a t i o n s seem to be t e l l i n g us something, but not enough about being Jewish or Protestant, young and female, white and of European o r i g i n s , to allow us to see what s o c i a l processes or sets of values and actions are associated with s u s c e p t i b i l i t y . A l l these constructs therefore seemed to be based on rather narrow t a c i t assumptions. But, from the anthropological standpoint, what was mostly noticeable by i t s absence was the enculturated i n d i v i d u a l . The voice of that whole i n d i v i d u a l was s i l e n t . My f i r s t i n c l i n a t i o n , prompted by the provocative notion that s u s c e p t i b i l i t y was related to membership on some s o c i a l category or other, was to undertake a systematic review of whatever data I could find which would r e f i n e the s o c i a l i d e n t i t y of sufferers and, by conjecture, augment that data with some projected notions as to what forms of experience, pathological or otherwise, might be associated with that membership. But, as at least one famous piece of epidemiological research had demonstrated, even a f i n e r mesh than that employed i n some of the research I read about was unable to catch the rig h t f i s h . In studying 3,000 people c a r e f u l l y i n f i v e r e l a t i v e l y homogenous groups over twenty years, and taking into account such factors as age, education, income, marital status and ethnic o r i g i n , Hinkle and Wolff (1958) discovered that only one quarter of the i n d i v i d u a l s i n each group experienced h a l f the i l l n e s s e s that occurred,, or were reported. They concluded that the c r i t i c a l factor i n the incidence of i l l n e s s had to be the i n d i v i d u a l ' s own i n t e r p r e t a t i o n of his/her l i f e s i t u a t i o n . In considering an approach to the study of an i n d i v i d u a l ' s l i f e s i t u a t i o n , and how t h i s might be systematically undertaken, I speculated on how l i f e events or habits might be connected to s u s c e p t i b i l i t y , i n terms of such variables as psychological stress, or d i e t , or other e c o l o g i c a l factors.^ j therefore reviewed the methods which seemed to be i n vogue to determine the l i k e l y sources of stress i n an i n d i v i d u a l ' s l i f e . Typical of one common approach to the problem of uncovering the sources of such stress i s the questionnaire method, the most well-known of which i s the 'Social Readjustment Rating Scale',^ which consists of forty-two 54 l i f e - e v e n t s , most of them unpleasant and believed by the authors to be ' s t r e s s f u l ' . 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 of t h i s shopping l i s t approach, pointing to the fact that what may be s t r e s s f u l for one person, e.g. retirement, may i n fact be a r e l i e f , or a release for someone else. Now although the epidemiologist and the medical anthropologist are often searching for the same thing, namely the ' r e l a t i o n of a disease process to a population l i v i n g and working i n a natural environment',^ i t would appear that, in some ways, epidemiology can sometimes be constrained by two assumptions, one related to methodology and the other to the established idea of disease in c u l t u r e . I s h a l l return to deal with the l a t t e r assumption l a t e r . ^ A methodology which posits c e r t a i n kinds of s o c i a l or psychological indicators as a p r i o r i i n establishing how an i n d i v i d u a l views his or her l i f e s i t u a t i o n , overlooks the importance of personal meaning and experience which an i n d i v i d u a l brings spontaneously to consciousness i n determining the s i g n i f i c a n c e which events have, or of how they should be defined. There are personal r u b r i c s which guide t h i s determining process, which are revealed i n the accounts which i n d i v i d u a l s give as to how they act towards themselves and towards others. The methodology which began to appear appropriate to my 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 consist of, then, i s rather r a d i c a l perhaps when considered alongside some conventional examining procedures, but i t i s part of the well established general anthropological t r a d i t i o n and therefore i s not r e a l l y r a d i c a l at a l l . 55 Theory advises methodology Over the years, an i n t e r e s t in the i n d i v i d u a l as the locus of culture has been developed and expanded upon i n anthropological enquiry and has found expression i n a number of related t h e o r e t i c a l orientations i n the study of how consciousness, knowledge and action as a t t r i b u t e s of the human subject 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 and to each other. Running through these theories are three common threads which have a bearing on knowledge, both s c i e n t i f i c and s o c i a l . The f i r s t of these i s an attack 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 involves r e j e c t i o n of the idea that data about the world imprints i t s e l f on the passive subject: knowledge of objects, i t i s asserted, always involves the i n t e r p r e t i v e work of an active consciousness. The second thread i s a c r i t i q u e of the notion that s c i e n t i f i c knowledge i s knowledge somehow divorced from s o c i a l or c u l t u r a l i n t e r e s t s and values. The t h i r d i s the emphasis placed on the symbolic character of s o c i a l representations: attention i s drawn to the ways in which such representations (e.g. r o l e s , kinship typologies, s o c i a l classes etc.) can become r e i f i e d , i . e . things-in-themselves as reference points i n s o c i a l communication.^ Attempting to understand the s i g n i f i c a n c e and meaning which the i n d i v i d u a l attached to l i f e experience i s a well-established interest in anthropology. Perhaps the most famous early advocate of t h i s approach was Edward Sapir, who r a i l e d elegantly against those who would discount the individual's i n t e r p r e t a t i o n of c u l t u r a l experience i n favour of abstracted configurations of ideas and actions as an appropriate d e s c r i p t i o n of a way of l i f e , or of 'culture' writ large. In arguing for the value of ethnography 56 i n t o t h e ' m o r e i n t i m a t e s t r u c t u r e ' o f c u l t u r e , r e p r e s e n t e d i n t h e ' c o n f i g u r a t i o n s o f e v a l u a t i o n s , i n c l u s i v e a n d e x c l u s i v e i m p l i c a t i o n s , p r i o r t i e s and p o t e n t i a l i t i e s o f r e a l i z a t i o n ' w h i c h i n d i v i d u a l s c o n s t r u c t f o r t h e m s e l v e s , S a p i r f i n d s t h e r e m e d y f o r w h a t h e c o n s i d e r s t o b e s i m p l e c a r i c a t u r e s o f c u l t u r e , o f t e n e n v i s a g e d a s ' c o m p l e t e , t i g h t , i m p e r s o n a l and o b j e c t i f i e d . ' ( S a p i r 1 9 6 1 : 2 0 1 , 2 0 2 ) T h e r e a r e , o f c o u r s e o t h e r e q u a l l y w e l l - k n o w n a n d n o t s o w e l l - k n o w n a n t h r o p o l o g i s t s who h a v e t a k e n a s i m i l a r p o s i t i o n . ^ What I t h o u g h t t o b e o f p r i m e r e s e a r c h i m p o r t a n c e was t o d i s c o v e r i n t h e s e l f - a d j u d i c a t i v e p r o c e s s o f my i n f o r m a n t s some i n h e r e n t s t r u c t u r e o f t h e i r v a l u e s and s e n s e o f i d e n t i t y . I was n o t a n t i c i p a t i n g a n y k i n d o f s o l u t i o n t o w h a t h a s b e e n c a l l e d t h e h e r m e n e u t i c c i r c l e , b u t was r e a d y , a s G e e r t z ( 1 9 8 3 ) p u t s i t , t o c o l l e c t ' e x p e r i e n c e - n e a r ' c o n c e p t s o f f e r e d b y my i n f o r m a n t s a n d w o r r y a b o u t how t o make a n t h r o p o l o g i c a l s e n s e o f t h o s e c o n c e p t s i n m o r e g e n e r a l i z e d t e r m s l a t e r . I w a n t e d t o f i n d o u t how i n f o r m a n t s d e a l t w i t h e v e n t s w h i c h t h e y t h e m s e l v e s l i n k e d t o t h e o r i g i n a n d p r o g r e s s ( o r r e s o l u t i o n ) o f t h e i r i l l n e s s . T h e o t h e r c o m p o n e n t o f my e n q u i r y wa s t o d e t e r m i n e how i n f o r m a n t s v i e w e d t h e e x p l a n a t i o n t h e y h a d b e e n o f f e r e d f o r t h e s i c k n e s s , w h e t h e r t h e y b e l i e v e d i t t o b e c o g e n t o r n o t a n d , b y i m p l i c a t i o n , h o w t h e y a d j u d g e d t h e t r e a t m e n t t h e y h a d r e c e i v e d . A s s e v e r a l w r i t e r s h a v e p o i n t e d o u t ( I d l e r 1 9 7 9 ; G o o d 1 9 7 7 ; L a n d y 1 9 7 7 ) , r e s e a r c h i n t o i l l n e s s o f t e n t e n d s t o a c c e p t t h e m e d i c a l e x p l a n a t i o n a s a g i v e n a n d f o c u s o n t h e s i c k r o l e a s t h e way i n w h i c h i n d i v i d u a l s r e a c t t o e s t a b l i s h e d ( a n d l a r g e l y u n q u e s t i o n e d ) d i a g n o s t i c c a t e g o r i z a t i o n s . T h i s b r i n g s me b a c k t o t h e o t h e r p o i n t I made c o n c e r n i n g e p i d e m i o l o g i c a l r e s e a r c h , w h i c h s o m e t i m e s t e n d s t o 57 take the disease e n t i t y for granted i n research design and to neglect the fact that i t i s an h i s t o r i c a l l y and c u l t u r a l l y r e l a t i v e construct. Furthermore, there are v a r i a t i o n s i n treatment to be found within a culture, which emphasize one aspect of a p a r t i c u l a r pathology over another, which i s why i t i s important to see how symptomatology i s defined i n a p a r t i c u l a r c u l t u r a l context. And i t i s the meaning which treatment has for the patient which anthropologists and s o c i o l o g i s t s involved i n i l l n e s s research consider to be an extremely important issue (Hall and Stacey 1978; Kleinman 1980). I decided therefore to interview prospective informants with open-ended questions of a general type, which would provide me with a case-history of s u f f e r i n g , where both the events i n t h e i r l i v e s which they associated with symptoms, the construction put upon those events and the i n t e r p r e t a t i o n of the diagnosis and treatment would be forthcoming. In a work which appeared after I had begun my research, Kleinman (1980) deals at length with the methodological approach to s u f f e r i n g and develops what he ref e r s to as a framework to discover 'explanatory models' of the 'natural h i s t o r y of i l l n e s s ' and the 'natural h i s t o r y of d i s e a s e 1 . In his research, he finds i t important to e l i c i t such models from a l l those engaged i n the c l i n i c a l process, but the patient's model i s c e n t r a l to h i s analysis.? Terms of the interview contract Before any interviews began, I prepared two documents for my informants to read. The f i r s t was a l e t t e r to a prospective informant, i n which I outlined my purposes i n undertaking a research project concerning people's experiences of being i l l . I explained that the objectives of my research were to find out, and make generalizations about the ways i n which 58 i n d i v i d u a l s react to the discovery that they have an i n t e s t i n a l disease, how they thought about the disease as compared with other kinds of diseases, what they considered to be s i g n i f i c a n t i n having caused i t and how they took care of themselves as a r e s u l t . I also said that I wanted to make generalizations about the ways i n which other people react(ed) to the knowledge that the informant had such a disease and the ways i n which those people treated the informant, as he/she endeavoured to cope with being i l l . I pointed out that my study did not involve questionnaires, that my prime int e r e s t was to find out, as completely as possible, what the informant's interpretations of sickness episodes were, and what being s i c k meant as a personal experience. I also promised i n th i s l e t t e r that i l l u s t r a t i o n s of personal experiences which were volunteered would be afforded anonymity and c o n f i d e n t i a l i t y . IBD informants i n a l o c a l context: l o c a l influences My access to informants began as a r e s u l t of talking to an IBD patient and a neighbour, who gave me the name of an organization which had been recommended to her by her doctor, as a l i k e l y source of help and advice for her i n finding out more about the pathology and also the chance to meet other people who suffered from the same, or a s i m i l a r condition to hers. This organization, comprised mostly of IBD patients and t h e i r r e l a t i v e s , i s known as the North Western Society of I n t e s t i n a l Research (SIR). Most of my informants, as i t happened, were subscribers to the monthly newsletter of th i s organization and contacted me i n response to a briefly-worded notice which I was able to place i n t h i s p u b l i c a t i o n . The notice simply stated that, as an anthropologist, I wished to interview people with inflammatory bowel disease. As I found out eventually, during the course of my i n t e r v i e w s , o n l y o n e o f my i n f o r m a n t s wa s a c t i v e i n t h i s o r g a n i z a t i o n a s a s u p p o r t e r a n d a r e g u l a r m e m b e r , a n d a l l t h e o t h e r i n f o r m a n t s I i n t e r v i e w e d e i t h e r e x p r e s s e d a m b i v a l e n c e o r l a c k o f i n t e r e s t i n t h e o r g a n i z a t i o n ' s p u r p o s e s . A t t h e t i m e , h o w e v e r , I h a d n o t e s t a b l i s h e d how i n f l u e n t i a l t h i s o r g a n i z a t i o n m i g h t b e i n s h a p i n g t h e u n d e r s t a n d i n g o f my i n f o r m a n t s ' u n d e r s t a n d i n g o f t h e i r i l l n e s s . B u t I w a n t t o d i g r e s s h e r e a n d i l l u s t r a t e t h e g e n e r a l s e n s e o f h ow i n f l a m m a t o r y b o w e l d i s e a s e w a s d e f i n e d a n d c o m m u n i c a t e d i n t h e S I R l i t e r a t u r e . I a l s o w a n t t o make b r i e f r e f e r e n c e t o t h e o p i n i o n s o f h e a l t h - c a r e s p e c i a l i s t s who e i t h e r s p o k e t o t h e S I R m e m b e r s h i p o r w e r e i n some way a f f i l i a t e d w i t h t h e o r g a n i z a t i o n . T h e s e o p i n i o n s a r e i m p o r t a n t , n o t s o much i n t e r m s o f m a k i n g a s s e s s m e n t s a s t o t h e d i r e c t c o n n e c t i o n t h e y h a v e w i t h my i n f o r m a n t s ' u n d e r s t a n d i n g , b u t r a t h e r b e c a u s e t h e y s e e m e d t o e x p r e s s c e r t a i n a u t h o r i t a t i v e v i e w s a b o u t t h e p a t h o l o g y w h i c h w e r e b e i n g a d v a n c e d i n t h e l o c a l s o c i a l w o r l d o f c o m m u n i c a t i o n i n w h i c h my i n f o r m a n t s g a i n e d t h e i r i n f o r m a t i o n , a n d b e c a u s e t h e y i n f l u e n c e d me i n my m e t h o d o l o g i c a l a n d p e r s o n a l a p p r o a c h t o my i n f o r m a n t s . T h e S I R o r g a n i z a t i o n was f o r m e d i n 1 9 7 6 , l a r g e l y t h r o u g h t h e e f f o r t s o f a man a n d w i f e w h o s e d a u g h t e r h a d d i e d f r o m C r o h n ' s d i s e a s e t w o y e a r s p r e v i o u s l y . T h e p u r p o s e o f t h e o r g a n i z a t i o n , a s a v o l u n t a r y a s s o c i a t i o n , was t o d i s s e m i n a t e i n f o r m a t i o n a b o u t I B D p a r t i c u l a r l y t o p a t i e n t s who h a d r e c e i v e d a d i a g n o s i s f o r u l c e r a t i v e c o l i t i s o r C r o h n ' s d i s e a s e , t h r o u g h r e g u l a r n e w s l e t t e r s a n d a n i n f o r m a t i o n b o o k l e t . T h i s l i t e r a t u r e w a s e d i t e d by t h e m e d i c a l a d v i s o r o f S I R , a D r . A n d e r s o n , who was a p r o m i n e n t g a s t r o e n t e r o l o g i s t a t t a c h e d t o t h e l a r g e s t g e n e r a l h o s p i t a l i n t h e r e g i o n . 60 Some o f t h e m o n i e s r a i s e d t h r o u g h c o n t r i b u t i o n s made b y S I R v o l u n t e e r s was a l s o u s e d t o f u n d a p r o g r a m m e o f r e s e a r c h , a l s o d i r e c t e d b y D r . A n d e r s o n , i n t o t h e p o s s i b i l i t y o f i n h e r i t e d t r a i t s i n t h e b l o o d c h e m i s t r y o f I BD p a t i e n t s , t h r o u g h c o m p a r i n g b l o o d s a m p l e s t a k e n f r o m t h e m a n d f r o m t h e i r p a r e n t s a n d o t h e r r e l a t i v e s . F r o m D r . A n d e r s o n , I o b t a i n e d a n e x p l a n a t i o n and d e s c r i p t i o n o f I B D w h i c h i n c l u d e d r e f e r e n c e t o t w o d i s t i n c t p h y s i o p a t h o l o g i c a l c o n d i t i o n s , o f u n k n o w n e t i o l o g y , w h i c h c o u l d , i n some c a s e s , b e f a t a l . He r e f e r r e d me t o t h e S I R b o o k l e t , w h i c h h e h a d w r i t t e n , f o r a m o r e d e t a i l e d a p p r a i s a l . I n o t e d t h a t , m i s s i n g f r o m t h i s p a t i e n t ' s b o o k l e t , was a n y r e f e r e n c e t o t h e e x t e n d e d d e b a t e c o n c e r n i n g t h e r o l e o f p s y c h o l o g i c a l o r e m o t i o n a l f a c t o r s a s i m p o r t a n t p r e c i p i t a t i n g c o n d i t i o n s i n t h e d i s e a s e p r o c e s s . I n s t e a d , t h e p r o b a b i l i t y o f I B D b e i n g ' p s y c h o s o m a t i c ' i n o r i g i n was l a r g e l y d i s c o u n t e d , o n t w o g r o u n d s : f i r s t , ' t h a t n o o n e k n o w s t h e c a u s e o f t h e s e d i s e a s e s , ( a n d ) t h e r e f o r e no o n e c a n s a y f o r s u r e w h a t r o l e p s y c h o l o g i c a l f a c t o r s p l a y ' , a n d s e c o n d l y , t h a t n o t a l l p e o p l e w i t h s i m i l a r e m o t i o n a l p r o b l e m s d e v e l o p t h e p a t h o l o g i e s . A l s o , i n n e w s l e t t e r s t o S I R m e m b e r s , t h e r e s e a r c h r e p o r t e d u p o n d e a l t a l m o s t e x c l u s i v e l y w i t h t h e a n a t o m i c a l and b i o c h e m i c a l a b n o r m a l i t i e s o b s e r v e d i n c o n j u n c t i o n w i t h a d i a g n o s i s o f I B D , o r w i t h a t t e m p t s t o l i n k I B D p o p u l a t i o n s a n d p o s s i b l e p a t h o g e n s t o g e t h e r . I a l s o n o t e d t h a t t h e o n l y r e s e a r c h d e a l i n g w i t h t h e p s y c h o s o c i a l c i r c u m s t a n c e s o f I B D p a t i e n t s wa s a p r e c i s o f t h e N o r w e g i a n s t u d y , w h i c h f o u n d no e v i d e n c e t o s u p p o r t t h e p r o p o s i t i o n t h a t u l c e r a t i v e c o l i t i s was o f p s y c h o s o m a t i c o r i g i n . ( S I R N e w s l e t t e r N o . 10 1 9 7 9 : 3 ) I c o u l d o n l y i n f e r f r o m t h i s D r . A n d e r s o n ' s a n t i p a t h y t o p s y c h o p a t h o l o g i c a l e x p l a n a t i o n s i f I B D , a v i e w p o i n t h e h a d a d v a n c e d i n o u r f i r s t c o n v e r s a t i o n . T h r o u g h a c o l l e a g u e o f D r . A n d e r s o n , I t h e n made c o n t a c t w i t h a D r . S , a s e n i o r p s y c h i a t r i s t a t t h e same h o s p i t a l , who g a v e l e c t u r e s t o S I R membe r s o n t h e p s y c h o l o g i c a l a s p e c t s o f I B D . I n h i s l e c t u r e s o n t h e r e l a t i o n s h i p b e t w e e n s t r e s s , u l c e r a t i v e c o l i t i s a n d C r o h n ' s d i s e a s e , D r . S e m p h a s i z e d t h e p r o b l e m s w h i c h p a t i e n t s h a v e t o f a c e , i n k n o w i n g t h a t t h e y h a v e b e c o m e v i c t i m s o f t h e s e m y s t e r i o u s p a t h o l o g i e s a n d i n c o p i n g w i t h t h e e f f e c t s o f r a d i c a l s u r g e r y . T h e t y p i f i c a t i o n o f ' g a s t r o e n t e r o l o g i c a l ' v e r s u s ' p s y c h i a t r i c ' e x p l a n a t i o n s c l e a r l y d i d n o t h o l d t r u e i n t h i s e n c a p s u l a t e d o p i n i o n , a n d I was a t a l o s s t o e x p l a i n why t h i s p s y c h i a t r i s t was a b l e t o d i s c o u n t t h e p s y c h o g e n i c a r g u m e n t i n t h e l i t e r a t u r e , d e s p i t e h i s f a m i l i a r i t y w i t h much o f t h e p u b l i s h e d m a t e r i a l . I n a n e x t e n d e d d i s c u s s i o n w i t h D r . S , I wa s o f f e r e d t h e a d a m a n t a r g u m e n t t h a t , i n h i s e x p e r i e n c e , t h e r e w e r e n o g r o u n d s t o b e l i e v e i n t h e p r o b a b i l i t y t h a t I BD wa s c a u s e d b y p s y c h o l o g i c a l o r e m o t i o n a l d i s o r d e r s o r a b e r r a n t p e r c e p t u a l o r c o g n i t i v e f u n c t i o n i n g i n h i s p a t i e n t s . R a t h e r , h e e x p e c t e d t h a t c o n t i n u i n g r e s e a r c h i n t h e f i e l d s o f a u t o - i m m u n e r e a c t i o n o r v i r o l o g y w o u l d p r o v i d e t h e e v e n t u a l k e y t o t h e u n d e r s t a n d i n g o f t h e c a u s e s o f t h e s e d i s e a s e s . A p r o m i n e n t s u r g e o n , n o t a f f i l i a t e d w i t h S I R ( b u t who h a s p e r f o r m e d r a d i c a l s u r g e r y o n some o f my i n f o r m a n t s ) a n d w i t h whom I h a d a s h o r t i n t e r v i e w d i s m i s s e d a b s o l u t e l y t h e p o s s i b i l i t y t h a t a p r o d u c t i v e r o u t e t o t h e u n d e r s t a n d i n g o f I BD m i g h t b e f o u n d i n t h e p s y c h o s o c i a l c i r c u m s t a n c e s o r l i f e - s i t u a t i o n s o f v i c t i m s . Y e t a n o t h e r s u r g e o n , a l s o p r a c t i s i n g i n t h e a r e a , and a s p e c i a l i s t i n r a d i c a l g a s t r o e n t e r o l o g i c a l o p e r a t i o n s , g a v e a l e c t u r e w h i c h was a t t e n d e d b y some S I R m e m b e r s , i n w h i c h h e i n t r o d u c e d h i m s e l f a s a p a s t a c q u a i n t a n c e o f D r . C r o h n a f t e r whom t h e d i s e a s e h a d b e e n 62 named. His lecture dealt e n t i r e l y with the novel s u r g i c a l techniques being developed to excise portions of the bowel and with new forms of hyperalimentation. In a discussion with t h i s surgeon a f t e r h i s lecture, I asked him whether he thought there was any merit i n seeking e t i o l o g i c a l explanations based on a patient's l i f e - s t y l e or emotional a t t i t u d e s . His response was that he did not believe that t h i s would be very productive, and that i n fact i f he was to know or be apprised of the personal l i f e - d e t a i l s of his patients, or to get to know them very well, he doubted that he would be able to perform r a d i c a l surgery upon them at a l l . From some general p r a c t i t i o n e r s I encountered, and with whom I discussed my research i n very broad terms, there was considerable eagerness to hear of my eventual fi n d i n g concerning the i l l n e s s careers of IBD informants. A l l of these p r a c t i t i o n e r s said that they suspected that some pattern of attitudes might be common to IBD patients and that those attitudes could well be part of the e t i o l o g i c a l framework, but that they had never had the time or the opportunity to confirm t h i s . IBD s u f f e r e r s : i n i t i a l observations At SIR meetings, I attempted to assess the ways i n which in d i v i d u a l s had arrived at a decision to become members of the organization and how those with IBD interpreted the r e l a t i o n s h i p between the medical lectures and t h e i r status as s u f f e r e r s . Most of my respondents, i n these b r i e f conversations, told me that they had been recommended by t h e i r doctors to get in touch with SIR because i t was an important source of information and companionship. They viewed themselves as the bearers of an a f f l i c t i o n which as yet could not be explained by medical science, which was a f f e c t i n g an ever-increasing 63 n u m b e r o f p e o p l e i n B r i t i s h C o l u m b i a a n d i n C a n a d a a s a w h o l e , a n d w h i c h s h o u l d b e c o m m a n d i n g a l a r g e r s h a r e o f g o v e r n m e n t a n d p r i v a t e f u n d i n g f o r m e d i c a l r e s e a r c h a n d i n v e s t i g a t i o n . U n d e r t h e s e c i r c u m s t a n c e s , i t wa s t h e g e n e r a l o p i n i o n o f t h e s m a l l g r o u p o f s u f f e r e r s w i t h whom I s p o k e a t t h a t t i m e , t h a t p h y s i c i a n s a n d s u r g e o n s w e r e d o i n g t h e b e s t t h a t t h e y c o u l d . A l l o f t h e m k n e w o f a t l e a s t o n e p e r s o n , f r i e n d , a c q u a i n t a n c e o r r e l a t i v e , who h a d d i e d a s a r e s u l t o f I B D . A l s o , s o f a r a s I c o u l d a s c e r t a i n , t h e s e i n d i v i d u a l s c o n s i d e r e d t h a t i n a l l r e s p e c t s , t h e i r mode o f l i f e a n d g e n e r a l a t t i t u d e t o t h e w o r l d d i d n o t d i s t i n g u i s h t h e m i n a n y way f r o m t h e i r s o c i a l p e e r s a n d c o n t e m p o r a r i e s , a p a r t f r o m t h e f a c t o f t h e i r i l l - h e a l t h a n d t h e a d j u s t m e n t s t o d a i l y r o u t i n e b r o u g h t a b o u t b y a t t a c k s o f d i a r r h o e a o r i n c o p i n g w i t h t h e c h a n g e s i n b o d y f u n c t i o n i n g a s a r e s u l t o f t h e i r h a v i n g b e c o m e ' o s t o m a t e s ' . A l t h o u g h t h e s e o c c a s i o n s t o m e e t I BD s u f f e r e r s p r o v i d e d me w i t h o n l y a s u p e r f i c i a l k i n d o f k n o w l e d g e a s t o t h e w a y t h e y u n d e r s t o o d t h e i r p l i g h t , I was i m p r e s s e d n o t o n l y w i t h t h e s o p h i s t i c a t e d r e n d i t i o n s I was o f f e r e d c o n c e r n i n g t h e b i o m e d i c a l e x p l a n a t i o n o f t h e i r i l l n e s s , b u t w i t h t h e s t o i c i s m w h i c h t h e y s h o w e d i n t a l k i n g a b o u t t h e u n c e r t a i n p r o g n o s i s a s s o c i a t e d w i t h t h i s e x p l a n a t i o n . I n some c a s e s t h i s s t o i c i s m a p p e a r e d a s a n a c c e p t a n c e o f t h e f a c t t h a t f a t e h a d p l a y e d some k i n d o f c r u e l t r i c k o n t h e i r l i v e s , f r o m w h i c h t h e r e wa s n o e s c a p e . B u t I was a l s o made a w a r e o f t h e d e g r e e t o w h i c h t h e b i o m e d i c a l ( o r m o r e s p e c i f i c a l l y ' g a s t r o e n t e r o l o g i c a l ' ) e x p l a n a t i o n a p p e a r e d t o s u b s u m e , o r h a v e p a r a m o u n t c y o v e r o t h e r i s s u e s w h i c h m i g h t c o n c e i v a b l y b e p a r t o f t h e d i s c o u r s e t h a t o n e m i g h t h a v e w i t h s o m e o n e c o n c e r n i n g t h e i r i l l n e s s s y m p t o m s . I t wa s a s i f t h e ' g a s t r o e n t e r o l o g i c a l ' 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 that I did, of obtaining an idea of the ways in which the pathology was seen by l o c a l prominent medical au t h o r i t i e s and of meeting i n d i v i d u a l s who might be my informants a l l seemed to legitimate my choice of method of i n v e s t i g a t i o n . But these experiences also sharpened my sense of the need for c e r t a i n extra precautions and strategies connected with the interviewing technique. I t was c l e a r , that no matter what might be forthcoming i n discussions about b e l i e f s concerning i l l n e s s , treatment or personal life-experiences, that inflammatory bowel disease was represented i n l o c a l s o c i a l communication as a condition which at the very least was to be feared, and at worst could r e s u l t i n death. I expected, c o r r e c t l y , that most of my informants would be made available to me from the membership of SIR. The members of t h i s association whom I had already met appeared to have a biomedical view of themselves i n which they had some confidence regarding the therapeutic or at least salving e f f o r t s expended on t h e i r behalf. Whether t h i s was a view they might express i n another context, would have to be ascertained. Whatever construction they would wish to place on t h e i r i l l n e s s and t h e i r l i v e s would have to be accepted by me insofar as I was i n no p o s i t i o n to manifestly affect such choices as they would be l i k e l y to make. It seemed appropriate therefore, to t r y my best not to i n d i c a t e , even i n a metacommunicative way, what I might think about what I was being t o l d . ^ Also, that interviews, where possible, should be conducted in private.9 65 I had s o l i c t e d approval from Dr. Anderson, i n his capacity as supervising editor of the membership newsletter, to include the i n v i t a t i o n to the patient readership to volunteer as informants, i n the form of the advertisement I mentioned above. The responses I received were to provide me with twenty-three of the twenty-five informants I was to eventually interview, most of whose experiences are recounted i n t h i s thesis.1^ 66 FOOTNOTES TO CHAPTER III 1. Among other f a c t o r s , the notion of d i s t i n c t i v e differences i n dietary habits between modern and more t r a d i t i o n a l c u l tures. In discussing non-in f e c t i v e diseases of the bowel, for example, which seem peculiar to modern culture, Burkitt suggests that the absence of f i b e r i n modern diet is a l i k e l y common causative factor. B u r k i t t , D.P., 'Some diseases c h a r a c t e r i s t i c of modern Western c i v i l i z a t i o n ' Logan, M.H., and Hunt, E.E., (eds.), 'Health and the Human Condition: Perspectives on Medical  Anthropology' Wadsworth Publishing 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 scale' Journal of Psychosomatic Research 11 1967:213-118. 3. This d e f i n i t i o n i s attributed to Scrimshaw, N.S. e t . a l . 'Interactions of N u t r i t i o n and Infe 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 connections between epidemiology and anthropology. See P f i f f e r l i n g , J-H., 'Some issues i n the consideration of non-Western and Western fo l k practices as epidemiologic data' Social Science and Medicine 9, 1975:655-658. = 4. I also discuss t h i s question i n terms of s o c i o l o g i c a l research i n my Footnote #8, chapter 1. 5. This i s a perspective drawn from many sources. With reference to t r a d i t i o n a l empiricism:- from Kant's understanding of the nature of knowledge and h i s theory of forms, i n which the argument i s made that such forms cannot be derived from the objects of experience - the understanding of objects always involves the imposition of a p r i o r i ideas. (Critique of Pure Reason). Also from phenomenology and Gestalt psychology. In anthropology, see Cassirer, E., The Philosophy of  Symbolic Forms 3 v o l s . New Haven: Yale University Press 1965. For a view of the r e l a t i v i s t i c view of science, see Max Weber, 'Science as a Vocation' 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 temporally s p e c i f i c character of science and connections to general s o c i a l knowledge, see Thomas Kuhn, The Structure of S c i e n t i f i c Revolutions: Chicago, U n i v e r s i t y of Chicago Press, 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 the Growth of Knowledge Cambridge: Cambridge Un i v e r s i t y Press 1970. For an attack on positivism, see Peter Winch, The  Idea of a So c i a l Science R.F. Holland (ed.), London: Routledge and Kegan Paul, 1963. For 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 Peter L. Berger and Thomas Luckmann, The Social Construction of R e a l i t y , New York: Doubleday Anchor, 1966. It could be argued that Durkheim's mandate to 'consider s o c i a l facts as things' might be amended to read, 'consider how the s o c i a l actor considers s o c i a l facts as things.' 67 For example, Kluckhohn, C., 'Theoretical bases for an empirical method of studying the a c q u i s i t i o n of culture by i n d i v i d u a l s ' Man 8 8 - 8 9 , July, 1939 : 9 8 - 1 0 3 , and the t r a d i t i o n of psychological anthropology, which would include such names as Margaret Mead, John Honigmann, Anthony Wallace, E r i k Erikson, Gregory Bateson, John Whiting, Richard Preston, Louise Spindler and many more. Kleinman points out how useful i t i s to be a p r a c t i s i n g physician, which gives him a f a i r l y ready access to doctor/patient i n t e r a c t i v e contexts. As I explain concerning one interview with a c h r o n i c a l l y i l l young man, t h i s i s not always sustainable. When privacy was intruded upon, i t had some regrettable consequences. In one interview, 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 his i l l n e s s began at a time when he was extremely angry with the ways in which his new bride's father was dealing both with him and his wife. His wife, meanwhile, who had agreed to stay i n another room i n the apartment, caught some of her husband's discourse and, coming into the room where the interview was taking place, i n s i s t e d that what she had heard from her husband 'confirmed her suspicion' 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 family arguments. She challenged me d i r e c t l y to confirm her opinion. I suggested that her idea might well have some merit. The couple began an argument and I l e f t , without completing the interview. On another occasion, i n an interview which I report on, an e l d e r l y woman whom I thought I would be interviewing i n private, was found to be sharing a small apartment with a man of whom she was c l e a r l y a f r a i d . As she whispered to me as I was leaving, "I would have so much more to t e l l you, i f we were alone", even though the man i n the next room did not seem to be a c t i v e l y l i s t e n i n g to our conversation. (See "Doris"). The informants to whom I refer d i r e c t l y , or who account for themselves i n the narratives I present, are, of course i d e n t i f i a b l e as persons i n what they have to say about themselves. As a kind of c h e c k l i s t , however, what follows here i s a general appraisal of 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 of inte r e s t from a more conventional s o c i o l o g i c a l or epidemiological standpoint. There were nineteen women and s i x men in the t o t a l interviewed population. The women ranged i n age from twenty-two to s i x t y - f i v e . Twelve of the women were currently married, four were unmarried, three either separated or widowed. Two of the men were married, four were either single or separated. The average age of the women was 3 5 . The average age of the men was 3 2 . In terms of r e l i g i o u s a f f i l i a t i o n , twenty-one of the informants had Protestant backgrounds, two were Catholic and two were Jewish. The age at which i l l n e s s was diagnosed ranged from 15 to 4 0 ; the most common age at which diagnosis was established was 2 3 . In terms of family background: English (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 ) D u t c h - C a n a d i a n ( 2 ) N o r w e g i a n - C a n a d i a n ( 1 ) R u s s i a n - C a n a d i a n ( 1 ) . I n v e r y r o u g h t e r m s , t h e 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 wa s g e n e r a l l y b l u e - c o l l a r ( w i t h two 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 and 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 b e 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 u n i v e r s i t y - l e v e l e d u c a t i o n . M o s t w e r e v e r y l i t e r a t e , a n d 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 p a r e n t s . 69 CHAPTER I V M a k i n g A n t h r o p o l o g i c a l S e n s e o f a C r u c i a l A c c o u n t 70 A f i e l d w o r k i n t e n t i o n a n d t h e f i r s t i n t e r v i e w I n s e t t i n g o u t o n my r e s e a r c h , i t wa s a q u o t e f r o m A n t h o n y W a l l a c e w h i c h was m o s t o f t e n u p p e r m o s t i n my m i n d . He s a i d , " . . . 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 i n v o l v e q u e s t i o n s o f b i o l o g i c a l a s w e l l a s p s y c h o l o g i c a l d y n a m i c s ) h e 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 a n d 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 a n d i t s t r e a t m e n t . T h u s h i s m o s t 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 h o w , i n t h e s o c i e t y i n q u e s t i o n , s y m p t o m a t o l o g y and 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 a n 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 a n d i s o b s e r v e d b o t h b y t h e v i c t i m a n d 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 w h a t i s h a p p e n i n g w i l l p l a y a n 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 w h a t w i l l b e t h e i r r e s p o n s e t o t h e i r s y m p t o m s . T h u s e v e n i f e t i o l o g y a n d t h e p r i m a r y s y m p t o m s o f a n 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 a s p h y s i o l o g i c a l a c c i d e n t s a n d t h u s a s l a r g e l y i n d e p e n d e n t o f 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 m u s t b e r e c o g n i z e d a s b e i n g h i g h l y d e p e n d e n t o n c u l t u r e , f o r t h e s e r e s p o n s e s t o i l l n e s s a r e 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 -a n d , i n p a r t i c u l a r , t h e p a t i e n t ' s t h e o r y o f i l l n e s s . I n s h o r t , s i n c e t h e c a u s e o f i l l n e s s , e v e n i f p h y s i o l o g i c a l l y 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 b y f e e d b a c k v i a t h e 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 , t h e 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 d e t e r m i n i n g r o l e " . ( 1 9 7 2 : 3 8 4 - 5 ) . I n my v e r y f i r s t i n t e r v i e w , I wa s r a t h e r n e r v o u s a n d s e l f - c o n s c i o u s and made t h e m i s t a k e o f n o t p r o v i d i n g t h e i n f o r m a n t w i t h e n o u g h t i m e t o e x p a n d on w h a t s h e was t e l l i n g me , l a r g e l y b e c a u s e I f e l t i t n e c e s s a r y t o s p e a k w h e n my i n f o r m a n t p a u s e d i n h e r d i s c o u r s e . My i n t e r v i e w e e was a m a t u r e woman , w i t h a p l e a s a n t d e m e a n o u r , g r e g a r i o u s , a n d , f r o m t h e w a y s i n w h i c h s h e c o m p o r t e d h e r s e l f i n h e r h o u s e , was h i g h l y c o m p e t e n t a n d w e l l o r g a n i z e d i n m e e t i n g t h e t a s k s w h i c h s h e o b v i o u s l y e n j o y e d , w h i c h wa s t o p r o v i d e a c o m f o r t a b l e and 71 a n d a e s t h e t i c a l l y a t t r a c t i v e e n v i r o n m e n t f o r h e r f a m i l y . S h e o b v i o u s l y c a r e d v e r y d e e p l y f o r h e r t w o s c h o o l - a g e c h i l d r e n . A s p a r t o f my i n t r o d u c t i o n t o h e r h o m e , s h e s h o w e d me h e r m o d e r n k i t c h e n a n d h e r c o l l e c t i o n o f r e c i p e b o o k s , w h i c h s h e s a i d h e l p e d h e r i n h e r e f f o r t t o p r o v i d e a w i d e r a n g e o f i n t e r e s t i n g and n u t r i t i o u s m e a l s f o r h e r f a m i l y . I n o t i c e d and r e m a r k e d u p o n t h e r a n g e a n d v a r i e t y o f t h e b o o k s i n t h e b o o k c a s e , and s h e t o l d me t h a t s h e wa s a n a v i d r e a d e r o f h i s t o r y a n d v e r y much c o m m i t t e d t o e f f o r t s t o s a v e t h e n a t u r a l e n v i r o n m e n t . She t o l d me t h a t s h e h a d g r a d u a t e d f r o m u n i v e r s i t y a n d a c q u i r e d t e c h n i c a l q u a l i f i c a t i o n s b e f o r e s h e m a r r i e d . I n r e s p o n s e t o my q u e s t i o n c o n c e r n i n g h e r i l l n e s s and why s h e h a d r e s p o n d e d t o my a d v e r t i s e m e n t i n t h e S I R n e w l e t t e r , s h e s a i d t h a t s h e b e l i e v e d t h a t a n y k i n d o f r e s e a r c h i n t o C r o h n ' s d i s e a s e s h o u l d b e s u p p o r t e d a n d f e l t o b l i g e d t o b e a p a r t i c i p a n t i n my i n v e s t i g a t i o n , i f i t m i g h t l e a d i n some way t o t h e e s t a b l i s h m e n t o f a t h e o r y o f c a u s a t i o n . I n r e s p o n s e t o my q u e s t i o n r e g a r d i n g t h e h i s t o r y o f h e r i l l n e s s , s h e t o l d me t h a t s h e h a d s u f f e r e d f r o m C r o h n ' s d i s e a s e f o r some y e a r s , b u t t h a t i n r e c e n t m o n t h s s h e h a d h a d v e r y f e w s y m p t o m s and t h a t f r o m a r a d i o l o g i s t ' s r e p o r t w h i c h s h e h a d s e e n s h e h a d b e e n a s s u r e d t h a t t h e r e w e r e no l o n g e r a n y s i g n s o f t h e d i s e a s e b e i n g p r e s e n t . S h e t o l d me a l s o t h a t a l t h o u g h s h e k n e w t h a t , f r o m a m e d i c a l s t a n d p o i n t , h e r c o n d i t i o n was t h o u g h t o f a s a d i s e a s e o f m y s t e r i o u s o r i g i n , a n d t h a t s h e was p r e p a r e d f o r i t t o s t r i k e h e r a g a i n , s h e h a d f o r some t i m e f e l t ' f a n t a s t i c ' . S h e h a d come t o b e l i e v e t h a t s t r e s s b r o u g h t a b o u t b y t h e d i f f i c u l t r e l a t i o n s h i p s h e h a d h a d w i t h h e r h u s b a n d and h e r m o t h e r - i n - l a w was somehow c o n n e c t e d t o h e r l e n g t h y s i c k n e s s e p i s o d e . She t o l d me t h a t t h e s y m p t o m s b e g a n when h e r m o t h e r - i n - l a w came t o l i v e i n t h e 72 a r e a , a n d t h a t t h e y h a d a b a t e d w h e n s h e h a d d e c i d e d t o s t o p d e f e r r i n g t o h e r m o t h e r - i n - l a w ' s d e m a n d s f o r h e r t i m e a n d a t t e n t i o n . H e r h u s b a n d h a d i n s i s t e d f o r some t i m e a f t e r t h a t , t h a t s h e c o n c e d e t o h i s m o t h e r ' s e n t r e a t i e s f o r c o n s t a n t a t t e n t i o n , b e c a u s e o f h i s v i e w o f h e r r o l e a s a d a u g h t e r - i n - l a w . B u t h e r n e i g h b o u r s h a d come t o h e r d e f e n c e a n d g i v e n h e r t h e s u p p o r t s h e s a i d s h e h a d n e e d e d t o d e a l w i t h h e r h u s b a n d ' s d o g m a t i c a t t i t u d e . A t t h e t i m e s h e b e g a n t o f e e l b e t t e r , h e r s p e c i a l i s t h a d p r e s c r i b e d a new c h e m o t h e r a p e u t i c r e g i m e n . She n e v e r d i d , i n f a c t , t a k e t h e t a b l e t s w h i c h t h e p r e s c r i p t i o n c a l l e d f o r , b e l i e v i n g t h a t s h e was ' b e t t e r o f f w i t h o u t t h e m . I n s t e a d , s h e h a d b e e n t a k i n g v i t a m i n s u p p l e m e n t s , a n d h a d t h r o w n t h e o t h e r t a b l e t s down t h e t o i l e t . S h e s a i d t h a t h e r s p e c i a l i s t h a d a t t r i b u t e d h e r i m p r o v e d c o n d i t i o n t o t h e c h e m o t h e r a p y h e h a d p r e s c r i b e d a n d i n f a c t h a d d o u b l e d t h e d o s a g e d i r e c t l y a s a r e s u l t o f h i s a s s e s s m e n t o f t h e r a d i o l o g i c a l i n f o r m a t i o n . My i n f o r m a n t t o l d me t h a t s h e h a d n o t i n f o r m e d h e r s p e c i a l i s t t h a t s h e wa s n o t t a k i n g a n y o f t h i s m e d i c a t i o n , b e c a u s e s h e wa s s u r e f r o m h e r a p p r a i s a l o f h i s ' a u t h o r i t a r i a n ' a t t i t u d e t h a t t h i s w o u l d o n l y make l i f e d i f f i c u l t f o r h e r a n d t h a t s h e d o u b t e d v e r y m u c h w h e t h e r h e w o u l d h a v e u n d e r s t o o d w h a t s h e t o l d h i m c o n c e r n i n g h e r l i f e - s i t u a t i o n a n d t h e p r o d u c t i v e c h a n g e s t o h e r h e a l t h w h i c h s h e b e l i e v e d h a d b e e n b r o u g h t a b o u t b y t h e c h a n g e s s h e h a d made i n h e r s o c i a l r e l a t i o n s h i p s . I n t h e n o t e s w h i c h I made f o r m y s e l f a f t e r t h i s i n t e r v i e w , I w r o t e , ' h e r e i s a n e x t r o v e r t , h i g h l y i n t e l l i g e n t a n d c o m p a s s i o n a t e p e r s o n , a woman who p l a c e s a g r e a t d e a l o f i m p o r t a n c e o n h e r r o l e a s a m o t h e r a n d a s m a n a g e r o f h e r d o m e s t i c w o r l d , a n d who o b v i o u s l y d e r i v e s a g o o d d e a l o f s a t i s f a c t i o n f r o m l i v i n g i n a c o m f o r t a b l e home i n a m i d d l e - c l a s s s u b u r b . C l e a r l y h e r 7 3 i l l n e s s was a learning process, and what she learned was that her body responded p o s i t i v e l y to her change in attitude towards her husband and mother-in-law. She i s t e l l i n g me that she developed some hypothesis concerning 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 an emotional e f f e c t on her, between the behavioural and a f f e c t u a l o r i e n t a t i o n which was expected of her i n her r o l e as a wife and some sort of need to assert a more genuinely f e l t sense of her s i t u a t i o n , that t o l d her that the prescribed behaviour was inauthentic. In t h i s process, she appears to have had to convince h e r s e l f and others, that there was no 'natural' or ' i n s t i n c t i v e l y -d i r ected' connection which should be made between her r o l e as wife and mother and the s o c i a l performances she was supposed to be following. She seems to have found support and encouragement from others to legitimate her r e f u t a t i o n of t h i s argument. It i s c l e a r l y a question of her summoning up the e f f o r t to transcend the authority contained in the informal techniques of s o c i a l c ontrol exercised by members of her family group. In a more t r a d i t i o n a l society, she might well appear to have been the v i c t i m of witchcraft. But what was the process by which the progressive modification of her view of i l l n e s s was achieved? And where does t h i s leave the question of disease? ' I l e f t t h i s informant's house thinking that her explanation was just too simple. Why should such a r e g u l a r l y experienced and f a i r l y generalized phenomenon of r e f u t i n g others' projections of oneself cause t h i s informant so much d i f f i c u l t y ? What strength of association, or s p e c i f i c i t y of communicated meanings could there be i n t h i s account of d i s e a s e / i l l n e s s connection which might explain the nature of her disease s u s c e p t i b i l i t y ? I then r e a l i z e d that I was s t i l l c l i n g i n g to the idea that a disease actually 74 existed, that I was working with a d i a l e c t i c a l notion that I had to transcend and which my informant had gone some way to refute. Inflammatory bowel disease, to me, s t i l l had the character of what Lukacs would consider as a commodity-structure, with a 'phantom o b j e c t i v i t y ' that seemed 'so s t r i c t l y r a t i o n a l .... as to conceal every trace of i t s fundamental nature: the r e l a t i o n between people.'1 In my second interview, the idea of disease as a c u l t u r a l product was made much cl e a r e r . This was a c r u c i a l interview, because i t seemed to show how, i n the experience of a young woman who claimed to be healed, the p a r t i a l i t y of other's r e l a t i o n s h i p with the i n d i v i d u a l i s accompanied by t a c i t assumptions that that p a r t i a l i t y i s somehow to be understood as a template for selfhood. I t also i l l u s t r a t e s , v i v i d l y , and i n d e t a i l , how the concept of i l l n e s s i s modified as a process, and the misplaced investment i n the authority of others i s reconciled. "Sarah": a c r u c i a l informant (Ref: Informant #2, 'Sarah', October 31st) SF: "What do you think about c o l i t i s ? What does i t mean to you? What did other people think about i t ? " Resp: I had my l a s t bout of i t seven years ago in Vancouver and have had no symptoms since. You know, I think I had i t a l l my l i f e ... I used to have an upset stomach very r e g u l a r l y and diarrhoea quite often..." SF: (interrupting) "You thought that was normal?" Resp: "..yes, I assumed everybody had bowel movements l i k e that, when I was 18 I was at s e c r e t a r i a l college, a f t e r having been out i n the world a b i t before that". 75 SF: "Out i n the world?" Resp: "Yes, I had been a laboratory technician and was doing an external degree i n haematology, you see I had been encouraged by my mother to go out to work rather than go to u n i v e r s i t y , mother thought that a woman with an arts degree would be a blue-stocking .. so I went to the s e c r e t a r i a l college, I stayed with r e l a t i v e s and got sick and i t was diagnosed as appendicitis and I had an appendectomy but i t wasn't that at a l l and a week l a t e r I got p e r i t o n i t i s followed by a pe l v i c abscess, which involved two months i n h o s p i t a l . That was probably my f i r s t major bout, looking back on i t , then I spent f i v e years t r a v e l l i n g , Mexico, Orient, A u s t r a l i a , B.C., Tokyo, using my s e c r e t a r i a l s k i l l s and occasionally being sick, maybe (I had thought) due to di f f e r e n t foods, I didn't know. Then I went back to the U.K. for four months and found that I was homesick for Vancouver of a l l places, so I came back to Vancouver to work at" (Omitted: a u n i v e r s i t y , i n a department) "as a secretary, I was l i v i n g with a fellow at the time with marriage as a p o s s i b i l i t y . I may have been engaged at the time of the onset of my symptoms. I think so. Anyway, he had hurt h i s back, he needed major surgery for i t and while he was sick I developed my 'usual diarrhoea'" ( r o l l i n g her eyes)" and so I asked one of the professors, a woman who taught c l a s s i c a l studies, she was a good friend at the time, she was an older woman..." (Pause). SF: "Why her"? Resp. "Well, there were others I could have asked, there was" ('Frederick') "and another g i r l who l i v e d with us, but I couldn't ask him because he was a b i t squeamish and the g i r l wouldn't have been appropriate.." 76 SF: (interrupting) "In what sense?" Resp: "The other g i r l ? No, she wouldn't. I needed someone who didn't know me too w e l l , someone who would take me s e r i o u s l y . People who are close to me don't take me s e r i o u s l y , or didn't ... the person I did ask took an in t e r e s t i n me, genuinely interested i n my personal l i f e ... I would babysit for her, she was English ... I had been to Greece with them, her and her husband they were good f r i e n d s , she was an older woman you see, I asked her whether she thought that diarrhoea and mucus was normal ... also I was bleeding... I had been grumbling about my stomach at home, yes, at home with my boyfriend and the g i r l I was t e l l i n g you, well , they were sympathetic... I was r e a l l y grumbling I had t o l d them about cramps, I didn't r e a l l y f e e l unusual, but in fact I had thought the symptoms were normal, anyway the professor lady t o l d me that i t was NOT NORMAL and that I should go to a doctor, I discovered one through my f l a t mate, the g i r l , he was very e f f i c i e n t , he recommended sigmoidoscopy... I thought I was going to die when I had that ... my i l l n e s s was never r e a l l y explained, I had thought to myself I w i l l never complain of t h i s again i f t h i s i s what happens, the doctor spread newspaper a l l over the  fl o o r the INCREDIBLE INDIGNITY OF IT ALL" (she i s angry) "and the doctor laughed..." (pause) SF: "He laughed at you, he was unsympathetic, what?" Resp: "He laughed at my response. Then he gave me a Barium meal ... anyway, the GP t o l d me to keep i n touch with him. Well, before the r e s u l t s came i n I was sick, I started to vomit, I t o l d my room mate, she r e a l i z e d I was i l l , phoned the doctor. He was away. There was another doctor i n the same c l i n i c , she sent me straight into h o s p i t a l , VGH, you know the funny thing was (Frederick) was also i n h o s p i t a l at the time. He was on the t h i r d f l o o r and I was on the f i f t h f l o o r , he had been i n h o s p i t a l for three days for h i s back surgery .. I was on sulphur drugs, made me smell and I was nauseated, a f t e r a couple of days, the orthopaedic surgeon who was looking after (Frederick) came down to see me, (Frederick) had t o l d him that we were engaged and he said, you know, he said "YOU ARE ONLY IN HERE BECAUSE YOU ARE ANGRY ABOUT 'FREDERICK' BEING IN HERE" (emphasis, mimicking q u i z z i c a l taunt) "and I GOT SO MAD a few days after my GP came to see me and then saw me every day and my c o l i t i s got so bad that I went down to ninety-seven pounds from a hundred and twenty pounds i n the space of two weeks, the doctor said, in an objective way, that a colostomy was being considered because once i t , the c o l i t i s , got a hold i t would poison the system, having had p e r i t o n i t i s I knew what that was about, I didn't l i k e the idea of taking sulphur, or of having a colostomy because I was so young, twenty-seven, and I didn't l i k e the idea of going to the beach with a bag on my tummy, I asked the GP straightaway i f I could leave h o s p i t a l , anyway, i t was something to do with the surgeon coming down and putting the idea into my head that I was DOING THIS TO MYSELF" (major emphasis) "once I knew I was doing i t to myself, i t was easier, a l l of a sudden I knew I had a choice, I could carry on being sick and at the mercy of doctors WHO COULD NOT BE SUBJECTIVE I thought, HOW CAN YOU TRUST SOMEONE OUTSIDE YOUR OWN BODY" (n.b. major emphasis here) " i t ' s one's own PERSONAL EXPERIENCE, SO PERSONAL, INTENSE, MY SICKNESS TO ME" (she becomes agitated) "that i t seemed ludicrous TO ALLOW AN OUTSIDER TO TAKE CONTROL OF THAT ILLNESS so I had a much more d i f f i c u l t choice, to TAKE CONTROL OF SICKNESS MYSELF" (she leans forward, i n s i s t i n g l y ) "and that meant getting out of 78 h o s p i t a l . I h a d t o s i g n a r e l e a s e f o r m , t h e GP t r i e d t o p e r s u a d e me t o STAY i n h o s p i t a l f o r t r e a t m e n t b u t n o t t h a t s t r o n g a n a r g u m e n t , b e c a u s e h e r e a l i z e d t h a t I w a n t e d OUT no m a t t e r w h a t . . . . " ( P a u s e ) S F : " D i d y o u e x p l a i n why y o u w a n t e d o u t , t o y o u r G P ? " R e s p . " N o . I wa s o n G o d k n o w s how many s u l p h u r p i l l s a n d s t u c k t o t h e b l a n d d i e t , b a c k t o w o r k , b u t I w a s n ' t f a r f r o m t h e J o h n a t a n y t i m e , my f l a t m a t e s a i d I wa s s t u p i d a n d m o s t o f my f r i e n d s w e r e w o r r i e d , my c o u s i n a n d h e r h u s b a n d t h e s a m e , a n d a l l t h i s t i m e ' F r e d e r i c k ' s t a y e d i n h o s p i t a l , t h e n he came home a n d wa s g i v e n m o s t o f t h e a t t e n t i o n , o n e d a y I d e c i d e d t h a t I h a d n ' t w o r k e d h a r d e n o u g h a t i t , a t c u r i n g t h i s c o l i t i s , s o I d e c i d e d t o a s k a n o t h e r p r o f e s s o r , a women who ( o m i t t e d ) . . . . C h r i s t o n l y k n o w s w h y , I L I T E R A L L Y HEARD M Y S E L F A S K THE Q U E S T I O N " ( r o l l i n g h e r e y e s ) " . . . s t i l l a t t h e b a c k o f my m i n d was t h i s s u r g e o n . . . I g o t a n g r y . . . i t h a d m e a n t t r a n s p o s i n g my m e n t a l c o n d i t i o n i n t o p h y s i c a l . . . I b e l i e v e t h a t p h y s i c a l w e l l - b e i n g i s i n t e r - r e l a t e d w i t h m e n t a l . . . i t wa s j u s t t h a t I k n e w t h a t t h e r e wa s a n e e d t o t r a n s p o s e i t . . . t h e s u r g e o n h a d t o l d me t h a t I wa s a n g r y . . . t h a t made me ANGRY . . . t h e r e w a s t r u t h t o t h a t . . . I c o u l d s e e t h a t s o m e w h e r e . . . w h e n a k i d i s u p s e t i t p e e s i t s p a n t s . . . I wa s s h i t t i n g away y o u k n o w , y o u c a n b e p h y s i c a l l y i l l a n d a c c e p t e d b y s o c i e t y b u t y o u c a n ' t b e m e n t a l l y i l l a n d be a c c e p t e d b y s o c i e t y , I d i d n ' t f e e l t h a t t h e r e w a s a s t i g m a a t t a c h e d t o c o l i t i s . . . s o i t w a s o n l y s u b c o n s c i o u s a n g e r b e i n g e x p r e s s e d a s c o l i t i s . . . . o . k . a n g e r i s t h e r e , b e i n g e x p r e s s e d a s c o l i t i s . . . n o t h e a l t h y , i t ' s c o m m i t t i n g s u i c i d e a n d y o u a r e c o m m i t t i n g s u i c i d e m e n t a l l y . . . s o I w e n t t o a p s y c h i a t r i s t . I h a d t h e b a t t l e won t h e r e , b e c a u s e a p s y c h i a t r i s t w o u l d g i v e a m i l l i o n d o l l a r s t o h a v e s omeone who ' t h i n k s t h a t t h e y k n o w ' " ( g e s t i c u l a t i n g , ) "because they are then 'on guard'" (she waves fingers) "the prof i n the department (omitted) recommended t h i s p s y c h i a t r i s t Dr. K , my GP was against i t , he said he didn't believe in psychiatry, I persuaded him to give me a r e f e r r a l . Well I never knew anything l i k e i t , or could be l i k e i t , never r e a l i z e d that psychotherapy could be so p a i n f u l , i t bore out ray suspicion that I had transposed mental pain to physical pain, I had four months of therapy both group and one-to-one and within four months the c o l i t i s had completely disappeared, actually within three weeks of seeing the p s y c h i a t r i s t , and, without him giving me i n s t r u c t i o n s , but with his approval I went vegetarian, stopped a l l medication against the p r e s c r i p t i o n from my GP, well I s t i l l had symptoms but they tapered o f f , I was such an incred i b l e patient, I was on video tape, I was on sodium pentathol (that was dreadful, your l i f e , your whole l i f e i n front of you i n a couple of hours) and the p s y c h i a t r i s t did a before and a f t e r , a video tape, before and a f t e r . . . " SF: (interrupting) "Before and after what?" Resp: "Well, before, I looked r e a l l y old, yellow, had odour of decay, I was r e a l l y a wreck and after? ..well, we had a psychodrama of me blowing my top and expressing TRUE ANGER" (major emphasis here) "I f i n d i t d i f f i c u l t to be t r u l y angry, sure I can get s n i t t y and so on, but I'm t a l k i n g about both b a r r e l s . . . soon as I got that f a r , there was no more c o l i t i s , i t was a h e l l of a b a t t l e , I never worked so hard on a mental l e v e l , I went through as much pain on a mental l e v e l as on a physical l e v e l . . . w e l l , that't i t , end of story, no more c o l i t i s " . SF: "More, please". Resp: "Well, I did a l l the work on the c o l i t i s myself .. but i t wasn't 80 enough, I wanted to make sure that I didn't have i t again, I wanted to know where the anger came from, i t i s i n recognizing that the world wouldn't f a l l apart when anger i s expressed, that's what c o l i t i s i s a l l about, the EXPRESSION OR SUPPRESSION OF ANGER" (major emphasis) "and you know, expression, something w i l l hold you back when you are angry, so you do l i t t l e c h i l d i s h trantrums and the worst thing you do i s to s h i t , but there i s no way of concealing i t , the c o l i t i s that i s , because you smell and have a l l of those symptoms.". (Pause) SF: "And the source of your anger? I don't understand". Resp. "My anger goes way back, i n my p a r t i c u l a r childhood I wasn't wanted, I was shunted o f f to a housekeeper's care, I was a mistake r e a l l y . . . . " SF: (interrupting) "A mistake". Resp: "Yes, my mother was thirty-two when I was born, the other c h i l d r e n were ten years older, I was unplanned, my mother didn't have enough time or patience with me. When 'Frederick' had h i s operation and he was sick, there were two things going on, one he was getting a l l the a t t t e n t i o n , and you know, mother used to have bronchial asthma and I had to give her i n j e c t i o n s , I resented that,- i f anybody I am close to gets s i c k . . . " (Pause) "and I get angry because I have to care for them". (Pause). SF: "You mean, anybody? and, 'close to', what does that mean?" Resp: "True caring, when there i s something at stake, l i k e f r i e n d s h i p . " (Pause) SF: (attempting wit) "I wouldn't be i n that category, then, r e a l l y " . Resp: "No. There are two categories of people. I t ' s easier to t e l l your problems to a stranger, t h e i r judgement i s superior sometimes. You know, 81 f a m i l i a r i t y sometimes breeds contempt, i n close friendships I found myself 'guilty of the unknown s i n ' . . " (self-mocking) " t h i s connects up with my childhood, and also the fear of losing someone close to me, t h i s connects up with not being wanted as a c h i l d , which connects up with a fear of r e j e c t i o n . You see, FEAR ALWAYS COMES INTO IT". (Pause). SF: "And what happened to 'Frederick'?" Resp: "I had to be kitchen, bed, church and kinder, you know, the German expression, he was i n c r e d i b l y ambitious, I was going to be the 'executive wife'" (here she mimics, s a t i r i c a l dramatization) "with a l l that high expectation ... well that i s everything I am NOT, I'm l i g h t , f l i g h t y , I am into a l l kinds of various projects, I was a group leader i n psychological therapy sessions." (Pause) SF: "And what are you doing now, i n terms of 'projects'?" Resp: "Well I am busy with the (Omitted: theatre group) as a volunteer, I go to keep f i t classes, dog obedience t r a i n i n g , a l l sorts ... I'm normally out Mondays, weight watchers, Tuesdays dog obedience followed by keep f i t , Wednesdays free, Thursdays night school, Fridays (theatre group) Saturdays or Sundays I r i d e , I have a horse." (Pause) SF: "Well, thanks.. It's getting a l i t t l e l a t e . Could you just summarize how s o c i a l matters were connected to your recovery for me please?" Resp: "Sure. When 'Frederick' l e f t , I f e l t so much r e l i e f , the pressures were o f f , the therapist had said, POSTPONE THE WEDDING he said, i f you go ahead with 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 at my door...THEN a c t u a l l y s p l i t t i n g up with 'Frederick' ... you see, I had been with him for f i v e years." (Pause) 82 SF: "Did you blame yourself for that in some way?" Resp: "Blame? Yes I blamed 'Frederick 1, you know l i t e r a l l y he was the i r r i t a n t , he was so DEMANDING of time, e f f o r t , you know, he never DID anything in the house, no housework, he put me in a martyr trap. It sounds s i l l y , perhaps, but he was sort of eating my i n t e s t i n e s , that's what I mean by IRRITANT". (Pause). SF: "And?" Resp: "And, well of course what r e a l l y bothered me about being i n h o s p i t a l was surrendering my body to an outside FORCE, and an ABSTRACT FORCE!... things out of my control ... I didn't l i k e t h i s ... i t was a PERSONAL sickness .. fear of death came into i t ... I knew I could die ... death was r e a l p o s s i b i l i t y ... a r e a l shock ... here I was.... there were r e a l basic elements I was f i g h t i n g ...DOCTORS... to them i t was an everyday occurrence and other people had such a big hand in deciding whether I should l i v e or d i OTHER PEOPLE that gave the motivation to take i t a l l into my own hands ... I had become ju v e n i l e , or even e a r l i e r than that, i t goes back to UTTER DESPAIR that led up to the c o l i t i s ... THINGS GETTING OUT OF CONTROL AND GOT FURTHER OUT OF CONTROL by my getting c o l i t i s . " (Pause) SF: "Do you s t i l l have psychotherapy?" Resp: "No. I know that I am l i a b l e to get c o l i t i s again, but you know, I'm surrounded by the Kreidekreis" (tran. 'chalk c i r c l e ' ) "you know, the German expression, a protective c i r c l e you draw around yourself, people can come in i t s OK, but so long as you have that c i r c l e around you, you are IN CONTROL i t ' s something I came up with, that protective c i r c l e idea, then I was t o l d about the concept, I didn't, I hadn't heard about that before". (Pause) 83 SF: "So where does c o l i t i s come in?" Resp: "Society. Society gives 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 for i t , my grandmother died of c o l i t i s , my mother t o l d me that...." SF: ( i n t e r r u p t i n g ) "and you never connected i t up? you, or your mother never connected i t up with your childhood diarrhoea?" Resp: "No". SF: "Thanks very much, I'd better be going now". Resp: "One more thing. You know, some people think I am crazy when I talk about t h i s , whaddya c a l l i t , e x i s t e n t i a l business, my experience, and that c i r c l e around me. I don't discuss i t " . (Interview time: three hours). Reflections on an account In attempting to come to terms with t h i s narrative, i n r e l a t i n g i t to the information which I had already obtained from other sources, I was forced to r e f l e c t , f i r s t of a l l , on the seemingly enormous gulf separating the character of knowledge conveyed i n the medical l i t e r a t u r e and knowledge contained i n th i s account. In Sarah's version, biomedical b e l i e f s (and the actions associated with them) can be seen as symbolic constructs, reinforced by the authority vested i n them as a function of the accepted claim made by physicians to be i n the best p o s i t i o n to define the meaning of i l l n e s s . My reaction to her account was to be shocked by her c l i n i c a l experience and the implications of the apparent 'diagnostic mistake', which, i f i t had not been corrected, might had led to even more unnecessary surgery. Even more troubling, was the p o s s i b i l i t y that other people might not have been so 84 fortunate as to have had an opportunity to forgo such operations. Secondly, I was confused as to why the information contained i n the e x i s t e n t i a l account had not been r e f l e c t e d i n any s i g n i f i c a n t way i n any of the discussion of u l c e r a t i v e c o l i t i s i n the l i t e r a t u r e . This I thought, could be understood l a r g e l y because of the highly private character of the issues which arose i n Sarah's narrative, and because she had found that her explanations regarding the ' e x i s t e n t i a l business' had been interpreted by others as an i n d i c a t i o n that she was (or had been?) 'crazy'. It also seemed important that so far as communication with medical personnel was concerned, that there was l i t t l e scope i n engaging i n a discussion about her f e e l i n g s , which at the time of her diagnosis and h o s p i t a l i z a t i o n , were not e a s i l y expressible: and the preoccupation which these personnel exhibited with the explanations provided by the 'disease-model' c l e a r l y showed that attempts at such a discussion would have been, to say the least , an u p h i l l task. A double-bind resolved i n therapy? In her explanation of what Sarah discovered as to what was troubling her, and i n the psychotherapy she received to deal with the source of her anger, there seemed to be an appropriate l o g i c a l f i t . P r a c t i c a l l y , i t made sense that the long-standing absence of her physiopathological symptoms was c o r r e c t l y a t t r i b u t a b l e to the psychotherapy, which had helped her to resolve a number of dilemmas. Pre-eminent among these was the rather straightforward decision to sever her r e l a t i o n s h i p with her fiance. But why, or how was t h i s r e l a t i o n s h i p problematic? The answer to that question appeared to be found in the fundamental c o n f l i c t between some sort of sensual a t t r a c t i o n and r a t i o n a l d i s a f f e c t i o n . The ambiguity was inherent i n her obvious distaste 85 for the personality and attitudes of the object of her ' a f f e c t i o n 1 . This experience, i t seemed to me, mirrored the circumstances described by Bateson, i n h i s c l a s s i c work on the nature of the 'double-bind'. For Bateson, one of the major tangles i n human communication occurs because of the way i n which i n t e r p r e t i v e rules for action are misapplied. He proposes that learning always takes place i n some context which has formal c h a r a c t e r i s t i c s , i . e . , that i t i s structured. But such learning also occurs within a wider context, or metacontext, and such a sequence of contexts i s an open s e r i e s . In case of incongruence between context and metacontext, the i n d i v i d u a l i s faced with the dilemma either of being wrong i n the primary context 'or of being righ t for the wrong reasons or in the wrong way'. (Bateson 1972:245). The double-bind theory has of course been elaborated upon i n the work of Laing and others, who subscribe to the so-called ' a n t i - p s y c h i a t r i c ' school of thought. Here emphasis i s placed 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 and phenomenological circumstances of everyday experience. Rather than attempting to define how ' r a t i o n a l ' an i n d i v i d u a l i s , analysis proceeds through understanding how forms of r a t i o n a l i z a t i o n are learned and produced in symbolic i n t e r a c t i o n with others and the consequences t h i s process has for the functioning of the i n d i v i d u a l actor's a f f e c t i v e and cognitive states.2 Using t h i s l o g i c , i t could be argued that Sarah's existence p r i o r to her systematic and p a i n f u l process of self-examination was marked by fear and an unwillingness or i n a b i l i t y to deal with the auth o r i t a t i v e demands made of her by her fiance. Torn between the acceptance of the s o c i a l r o l e projected for her as a future wife ('the executive wife .. I had to be kitchen, bed, church and kinder') and the sense that t h i s ran counter to her more general sense of selfhood ('that i s everything I am NOT 1), together with the inchoate state 86 which t h i s produced in terms of her sensual self-knowledge, the choice with which she was presented was either to deny the r o l e , or to c r i t i c a l l y reconstruct her o r i e n t a t i o n to s o c i a l authority and to assert autonomy over her body, her emotionality and her r e l a t i o n s h i p s with others. This r a t i o n a l e which I produced i s , for the most part, an elaboration on the cosmology which Sarah h e r s e l f had used to describe the symbolic procedures which had brought about her i l l n e s s and her cure and a viewpoint c l e a r l y advocated by her ther a p i s t . But what was the truth-value of t h i s cosmology? Was i t simply a p a r t i c u l a r i s t i c set of explanations which had relevance only for Sarah, or did i t represent an appropriate schema with which to understand the psychosocial dynamics of other IBD sufferers? How and why was the biomedical d e f i n i t i o n discarded? Why the physiopathology? And i n what ways could her more general 'learning experience' be related to the c u l t u r a l context in which i t occurred? I l l n e s s experiences and formal knowledge of IBD: possible 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 psychoanalytic accounts which I had read, and r e l a t i n g those to the nature of the life-problem which Sarah had i d e n t i f i e d and confronted, my impression was that the attention paid to self-perception and cognition was well-placed, but d i s t o r t e d by the characterizations and c r y p t i c reductionist reports of patients' experiences: given the circumstances i n which Sarah had found h e r s e l f , I was prompted to consider what might have been the l i f e contexts of the i n d i v i d u a l s whose behaviour had been so neatly c r y s t a l l i z e d and r a t i o n a l i z e d as 'grossly psychotic' and/or 'schizophrenic'. Nevertheless, there were connections to be found between those appraisals of IBD s u f f e r e r s ' psychosocial status which 87 focussed on the r e f l e x i v e and e x p e r i e n t i a l material which had been e l i c i t e d from them, and elements of Sarah's account, which would support a general isomorphic i n t e r p r e t a t i o n and not simply a s t r i c t l y i n d i v i d u a l one. In t h i s sense, Sarah's i l l n e s s experience was indeed accompanied and p r e c i p i t a t e d by 'an outbreak of emotional disturbances' (Murray) which showed 'a f i x a t i o n on key figures i n her s o