Symptoms beyond diagnosis – a case study

Symptoms beyond diagnosis – a case study

C. SKOTT, phd, rn, The Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences,Göteborg, Sweden

SKOTT C. (2008) European Journal of Cancer Care 17, 549–556Symptoms beyond diagnosis – a case study

The aim of this paper was to discuss how words for symptoms relate to experience and to find out howseriously ill patients two years after diagnosis and treatment articulated suffering. Nine patients who have hada cancer tumour of the central nervous system were interviewed in their homes and the findings wereinterpreted in a hermeneutic process. Bodily, obstructive, emotive and metaphorical expressions of symptomsappeared. The transformed life situation involved inability to perform everyday tasks and a feeling of frustra-tion of needs and desires. The words for symptoms conveyed individual embodied experience connected to adiscourse of shared meanings. The relationship between individuality and culture means that words forsymptoms are created and understood in a process between patient and listener, between discourse, culture andhistory.

Keywords: symptoms, cancer, body image, cultural, communication, social.

INTRODUCTION

Symptoms may be defined as unwanted changes experi-enced and interpreted by patients as resulting from theirdisease. Expressing pain and anxiety, affliction and disor-der in conversations through which one seeks help callsfor mutual understanding. Patients, medical professionalsand society at large participate in a long process of nego-tiation about the significance and evaluation of symp-toms. To provide the possibility of communication, weneed words to represent symptoms, words as mediators ofexpectations associated with specific contexts. Thismeans a certain delay between the moment of the indi-vidual’s perception of undesired change and the verbaliza-tion of this. It is in this period of indefiniteness that theword for the experience is selected. The word is not theexperience itself but the mediation of experience made

meaningful. According to biomedical models and ideas,symptoms should be interpreted as direct expressions ofpathological processes and ideally lead up to diagnosis.However, that which patients understand to be significantin their suffering is not always considered to be a sign ofdisease and it may therefore be ignored by health profes-sionals. Communication of symptoms exceeds establish-ment of diagnosis.

Signs and symptoms

There is no simple, one to one connection betweensymptom and disease and a set of symptoms does notexhaustively describe a pathological process. Foucault(1994) has analysed the process through which medicaldiscourse have emerged. During the 18th century, largenumbers of patients were gathered in clinics and subjectedto developing medical knowledge. The ‘clinical method’was developed in an attempt to build a science based onthe exercise of ‘the medical gaze’. The confusing multi-tude of human responses to different pathological pro-cesses meant that the patient had to be viewed as anabstraction in order to establish a structured classificationof diseases. Symptoms became reified. Foucault dissects

Correspondence address: Carola Skott, social anthropologist, senior lec-turer at The Sahlgrenska Academy at Göteborg university, Institute ofHealth and Care Sciences, Box 457, SE 405 30 Göteborg, Sweden (e-mail:[email protected]).

Accepted 30 August 2007DOI: 10.1111/j.1365-2354.2007.00873.x

European Journal of Cancer Care, 2008, 17, 549–556

Original article

© 2008 The AuthorJournal compilation © 2008 Blackwell Publishing Ltd

mailto:[email protected]

the strange, tautological reasoning that lies at the heart ofthe argument; symptoms refer to disease and to the abso-lute distinction between health and disease, but diseasesimultaneously gives rise to symptoms. The reasoning iscircular (p. 92).

In modern biomedical terminology, signs are under-stood to be objective evidence of disease, which can beperceived by a professional, while symptoms, on the otherhand, are the subjective perception of illness. Martínez-Hernáez (2000) argues that ‘sign’ and ‘symptom’, whencontrasted, denote different orders of reality. As part of the‘biologized principle’ of present-day medicine, signs areconsidered natural and self-evident – they are the tip of theiceberg of disease. Symptoms, on the other hand, refer tothe patient’s interpretation of bodily, mental and emo-tional sensations – verbalized or enacted. They reflect theexpressive needs of the speaker. Implicitly, this meansthat a symptom may not be part of a physical reality or thevisible effect of a cause, but a human expression thatembodies meaning.

Symptoms, society and biomedicine

Obeysekere (1990) notes that symptoms work to mediatebetween privatized symbols and everyday language.Kirmayer (1994) remarks that there is a ‘natural metapho-ricity’ of symptoms (p. 207). Metaphoric elaboration con-tains simultaneously surface and deep meaning; a verbalexpression may refer simultaneously to different levels.We use bodily experiences to help us understand space orsociality. This is expressed in many languages or idioms ofdistress. Taussig (1980) writes that symptoms do morethan represent the function of our bodies; they also indi-cate critical, sensitive and contradictory components inculture and society. Symptoms are not ‘things in them-selves’. They conceal their roots in human reciprocity.When suffering is reduced to one or a few signs of pathol-ogy, the greater part of the complex cultural processthrough which sickness is experienced is edited out.Writing from the perspective of critical health psychology,Kugelman (2003) points out that claims to knowledgecirculate within power/knowledge networks and havedifferent effects according to who says what, when andto whom. He challenges the empiricist and rationalistphilosophies that tend to reify experiences as objec-tively present, dichotomous entities.

In situations of illness, values, convictions and moralrules become visible (van der Gest & Finkler 2004; Levin& Browner 2005). Willig (2000) argues that we mustdevelop our understanding of social, cultural and histori-cal situatedness and explore the ways in which ‘health’

and ‘illness’ are constructed through language. Thespoken word, embodiment and subjectivity need to betheorized and researched more fully in relation to powerin health-related discourses and practices.

The clinical encounter

The discourse of symptoms is elaborated in clinicalencounters. Expert and lay knowledge are involved inpower systems that privilege biomedical knowledge withthe authority to interpret symptoms as signs of abnor-mality, pathology, deviation or transgression. In thebiomedical encounter, the physician is expected to trans-late the patient’s complaints into that which is con-sidered authentic; biological signs of disease (Farmeret al. 2006). Medically unexplained symptoms comprisea considerable part of healthcare consultations. This mayfoster frustration among patients and physicians (Kir-mayer et al. 2004). However, the clinical encounter oftentakes the form of negotiation between patient andphysician about symptoms and diagnostic criteria intheir shared pursuit of a legitimate diagnosis. Althoughanyone can offer an interpretation of symptoms, theseinterpretations are awarded different degrees ofauthority.

It may be argued that contrary to a commonly heldopinion of a global biomedical model, there is a variety ofhospital cultures in different countries (van der Geest2005). What is understood as a legitimate symptom andthe word that is chosen to convey that symptom dependupon the specific social surroundings. Comparison ofillness narratives collected from a variety of sick individu-als, from diverse contexts shows that symptoms arelocated in multiple systems of meaning (Staiano 1986;Kleinman 1988; Good 1994; Lock 2002; Spector 2004;Kirmayer 2004, 2005). Expression of symptoms may beinterpreted as mechanisms through which patientsattempt to position themselves within their local worlds(Kirmayer & Young 1998). By integrating the ‘voice ofmedicine’ (Mishler 1984), patients learn which symptomto relate and which to remain silent about. I suggest thatthis feature of self-selected muteness in the clinicalencounter conceal important dimensions in patients’ suf-fering. The way patients communicate their symptoms ina healthcare setting may differ significantly from theirtalking in everyday life. In order to provide knowledgethat will improve communication between biomedicalrepresentatives and their clients it is thus essential toinvestigate words for symptoms used outside the biomedi-cal setting. The aim of this paper was to explore the wayin which seriously ill patients in a home context articu-

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late suffering in words and to discuss the concerns thatthese phrasings of symptoms reveal.

THE CASE STUDY: CONVERSATIONS WITHPATIENTS SUFFERING FROM A LIFETHREATENING CONDITION

Cancer has a long history of calling forth popular fears.The diagnosis of cancer may bring to mind worries thattranscend individual perceptions of affliction in the livedbody. Strengthened by powerful metaphors connectingpainful collective experiences to suffered individual per-ceptions, cancer evokes fears that transcend its deadli-ness (Sontag 1990; van der Molen 2000; Skott 2002).Patients who have had a primary central nervous systemlymphoma and have received surgery and chemotherapyoften suffer severe distress. Their experience of painfulsymptoms both pre- and post-diagnosis and therapy maybe intense. Nine seriously ill patients, five men and fourwomen between 50 and 78 years of age, included in astudy of age-adjusted chemotherapy (Goldkuhl et al.2002), took part in this study 2 years after diagnosis hadbeen established and their treatment completed. Theywere asked to tell about their illness experience. Symp-toms took up a great deal of space in the research con-versations. The focus of the interpretation was thereforedirected towards the words they used to convey theexperience of suffering. The unit of analysis is the inter-view text, documented with a tape recorder and inter-preted in a hermeneutic process. Paul Ricoeur maintains,in his theory of interpretation, that the tension of near-ness and distance in the research process is essential(Ricoeur 1976, 1981, 1991). Distance from the speakerand immediate frame of reference was in this studycreated by examining the accounts of suffering in isola-tion from the overall text. The words for symptoms weredistinguished and then, during the process of reflection,the whole text was once again considered. This oscilla-tion enriched our understanding of the meaning inherentin the words. The interviews consisted of informal lan-guage from everyday life, took place in the homes ofthe patients and lasted from one to several hours. Theresearcher was often invited to a cup of coffee andreached rapport by informal conversation and intenselistening. The opening question for the recorded inter-views was: ‘Please, tell me about your experience ofthe illness’. The study was approved by the ethicalcommittee at the university hospital (Ö476-01). Belowsome examples of patients’ narratives are given andthen the interpretation and areas of concerns aredescribed.

FINDINGS AND INTERPRETATION

Narratives of suffering

The first phase of the interpretation were to carefullylisten to the patients narrative and to make several read-ings of the text. When being asked to tell about theirexperiences, many patients started out to speak about howtheir illness had begun. A woman, since long a farmer anda talented horsewoman, concluded that the disease hadaltered her life completely:

That autumn I became absentminded, I often forgotto shut the gate to the paddock when I took the horsesout in the mornings and I felt so weak and I justwanted to sleep. My husband eventually understoodthat something was wrong, he took me to the hospitaland I got treatment . . . Now I cannot move around asI wish to do, I still try to ride a horse every week butI immediately get breathless . . . I have disposed ofmy own horses, we sold the farm, that was so sad . . . Iwould prefer to have died on the operating-table – mylife is so different now, I do not know what to do withit [symptoms in italics].

The remaining symptoms are most often painfullypresent in everyday work. A caretaker, now on half-timesickness pension tells about his situation when his treat-ment was over:

I like to work but I often make mistakes. I havealmost no muscles left in my ankle and very littleperception of touch so when I bump into things I justsome time afterwards notice what has happened.Everything takes time now, I have to turn the mattersover and over in my mind . . . you become half aman, not whole not the same.

Very few patients could return to previous occupation.A former computer consultant was in a process of accept-ing an early retirement pension. She was affected byserious aphasia as well as poor balance and a feeling ofpainful loneliness:

The treatment is completed but what remains is thefrustration of not being able to read, I still cannot seeproperly on my left hand side, I can understand whata word is about but when I try to pronounce, I stutterand when I reach the end of the word I have forgottenthe beginning, I have to repeat and repeat . . .

After telling about his former life as a policeman withan interest in sports and bodybuilding, a patient gets verysad:

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I am so weak, I am almost confined to bed, my handsflake off there is no skin left on them, nothing is leftof me, even my teeth are going to rack and ruin.

The conversations also included pleasant things thathad happened, optimistic views of the future and thank-fulness for being alive. However, since the subject of theinterviews concerned the experience of illness, sufferingand darkness were the main themes: ‘some days I stay inbed, I’m too tired to go out’. ‘I’ve completely lost strength’,‘I ran out of steam’, ‘I have no strength at all’.

Areas of concern

Following Ricoeur’s idea of the oscillation betweenengagement and distance in the research process, thewords for symptoms found in the narratives were in nextphase distinguished and decontextualized. Symptomswere then defined as ‘unwanted changes experienced andinterpreted by patients as resulting from their disease’.After the words were taken out of the text, they werecompared between themselves. Their lexical meaningwere elucidated and then considered in relation to thenarrative text and context. These interpretations of thewords produced three main areas of concern: reference tothe body, reference to obstacles and impediments andreference to emotions/feelings/reactions.

In sum, of 183 symptoms mentioned in the nine inter-views, one-third (61 symptoms) of these was connected tobody and bodily functions. Obstacles, impediments or theloss of some ability were often expressed (67 symptoms).Many symptoms (55) expressed emotions, feelings andreactions. Only six symptoms referred to pain. Of all thewords used for symptoms, only a few were mentioned

twice: tiredness, lack of strength, inability to speak andread and feelings of unreality and frustration. A significantpart (102 symptoms) were phrased as negations; as defi-ciency, absence, or inability. Symptoms such as memoryloss and difficulties in speaking, reading and writing alltransgress the border between body and mind. Reading, forexample, involves both eyes and intellect and experienc-ing difficulties with these causes frustration. Symptoms,then, trespass over borders and some of them do notconfine themselves to only one of those groups identifiedhere. These words are put in the group for obstacles andimpediments.

Symptoms referring directly to the body

Most of the patients spoke of disruptions in and deterio-ration of everyday life, often in connection with bodilyfunction: clumsiness, poor balance, breathlessness or stag-gering movements (Table 1). The words referring to thebody described it as unreliable and a disappointment.Some patients said that they were periodically unable toeat or sleep. Sometimes, they felt that they had no energyat all. The most common descriptions were related toweakness. ‘I am weaker, so weak and vulnerable to infec-tions’, ‘my arms and legs became weak’ and ‘my weaknessmeans I can’t cope any more’. The patient might feel‘absolutely finished’, ‘pushed aside’ or that they had ‘nodesire for anything at all’. Forgetfulness and fatigue werecommon complaints, as were insecurity and imbalance:‘I look all squiffy’.

Many complaints referred to the lack of some strengthor ability. Standing upright, pulling oneself up and downor moving around could cause problems. Some lacked thestrength to work or take walks. The body or body parts

Table 1. Bodily symptoms in alphabetical order

Words referring to bodily symptoms(in alphabetical order) Negations

Almost blind, backache, blisters in my mouth, blotchy,breathless, can feel my heart – it hurts, drawn to this side,fainted, fever, giddy, got a cold, got an ordinary cold, groggy, hada fever, had this headache, have a bit of a cough, have a rashin my mouth, have a swelling here, have become a bit clumsy,have got weak legs and arms, headache, look all squiffy, lost10 kg in weight, my body was ruined, my eye got bunged up,my face became swollen, my feet contracted, my fingertips arenumb, my left arm began to shake and tremble, my leg was bigand tender and swollen, my teeth are going to rack and ruin,pain, pain in my back, pain in the mouth cavity, poor balance,sick and weak, so thirsty and had to urinate all the time, staggermostly, started chewing, stay in bed, the eyes slow down a lot,unbalanced body, very little perception of touch, walkedunsteadily

Can’t get myself up and down but have to crawl about, cannotmove around outdoors, cannot wave my foot up and down couldnot eat, could not pull my pants on, could not run and jumplike I used to or work, could not stand on my legs, couldn’t see,don’t have the strength for such long walks, don’t lift my feet upas I should, don’t see anything on my right hand side, have nomuscles in my foot, have not perspired in five years, if I wantto pick something up I can’t, my body couldn’t cope, my handsflake off, there’s no skin left on them, no strength in my arm

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were often cited as having caused the problems: ‘my feetcontracted’, ‘my body couldn’t cope’. The pain and suffer-ing that such physical impairment engendered wasexistentially experienced as the body became a sourceof trouble – an obstacle to life.

Expressions of obstacles and impediments

In these painful recollections of what they had gonethrough, interviewees mentioned many hindrances totheir daily activities (Table 2). Impediments were experi-enced as signs of their disease. About one-third of thesymptoms had to do with something that was missingfrom normal life: not being able to see, speak normally,read, write or listen to the radio as before. Some patientscould not make a phone call, work in the garden, makeplans for the future, pull on their trousers on or even standon their legs. One man explained how he could not lift hisfeet up properly and he could not work.

Experience of time was sometimes altered. Not having aprecise perception of time or not having any memorieswere experienced as not understanding what was happen-ing or not being able to talk about the future. ‘I cannotcalculate time; I have no precise perception of time’. Theability to remember things in daily life was sometimesdisturbed: ‘I parked my car and then I couldn’t find itagain’, ‘reading books is so difficult. When I have readthrough a page I have forgotten the beginning’, ‘I do notremember what I’ve read’, ‘my memory is gone’. Somepeople said that they could not concentrate or performanything at all.

Many patients mentioned a lack of both physical andmental strength. Obstacles and impediments such as not

being able to read or to remember; ‘not having the samepace’ could not be explained exclusively through referenceto either the mind or the body. This suffering unites body,mind and self in a way that was captured by one of themale patients: ‘you become half a man, not whole, notthe same’. Taken together, these symptoms expressedobstructions to everyday aims as well as deep existentialvulnerability and fear.

Emotions and feelings

The span of feelings was wide; from not feeling quite wellto experiencing a sense of unreality or feeling absolutelyfinished. Frustration was expressed in relation to obstaclesand impediments by evidently target-oriented personali-ties. As a reaction to of no longer being able to carry onsome of the patients conveyed: ‘no desire for anything atall’, ‘there was nothing left of me’, ‘my life has become sodifferent, I don’t know what to do with it’. Feelings andemotions were often negative and expressed in generalterms such as: frustration, irritation, insecurity, loneli-ness, hopelessness, weakness and anxiety, sadness andimpatience. These feelings would have been experiencedby the patients in other contexts without being associatedwith sickness or disease as they were here. Impediments,disturbances and feelings that demanded these patients’attention were now experienced and expressed as beingcaused by their disease. This interpretation was implicitlyshared by patients and researcher.

The interviewees’ use of abstract and general terms toexpress feelings betrays their trust in the listener’s havinghad similar feelings and therefore being able to under-stand what was being related. Sometimes, feelings were

Table 2. Obstacles and impediments

Words referring to obstacles and impediments Negations

Absolutely finished, almost confined to bed, at the end I haveforgotten the beginning, I have to go through it again, becometired, certain things often go wrong, feeble, find it difficult toundertake anything at all, forget things, forgetful, had a strangeblackout, have to think out how to do things and it takes melonger to do them, if we are a lot of people then I have to closeoff, jumbled up in my head, more absent-minded, my memoryis gone, one forgets, poor memory, poor sleep, ran out of steam,read one page at a time, then I have to rest or I get a headache,sicker, so weak, the TV got stuck, the world was shrinking,tired*, too tired to go out, used to read a lot but it’s been muchless since I became ill, utterly worn out, weak and susceptible toinfections, weaker

Can’t handle this, I’m going to faint, can’t manage at all, cannotdo anything, not read properly, cannot read*, cannot see anydifference, and have no precise perception of time, cannot write,could not focus, could not listen to the radio, could not makea phone call, could not manage to read at first, could notremember, could not speak of what had happened, could notspeak properly, could not speak*, did not know what hadhappened, did not talk about the future, didn’t sleep, don’t knowwhether something had happened at this or that time, don’tremember, don’t work very fast, go to fetch something and thenI don’t know what I’m doing, haven’t got any strength at all,it is difficult to read books, I don’t know what I’ve read, myweakness means I can’t cope any more, no strength at all, nostrength*, not able to do anything at all, not so alert or strong,not so strong, not the same pace, parked my car and didn’t knowwhere, tried to read but can’t, cannot make sense of anythingand everything gets mixed up, when I’ve finished reading I don’tknow what I have read

*Mentioned verbatim twice.



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expressed with colourful metaphor: ‘crappy’, ‘mixed up’, ‘apressure’, ‘utterly worn out’, or ‘pushed aside’. I interpretthis kind of expression as an attempt to make experiencemore comprehensible and to use emotive terms todescribe distressing and exceptional experiences (Table 3).

DISCUSSION: SYMPTOMS AS SYMBOLS ANDCOMMUNICATION

The voices in this study are those of extremely vulnerablepeople in exposed situations. Their words for symptomsexpress individual embodied experience connected to adiscourse of shared meanings. A complicated pictureemerges. More than every second word for a symptomexpressed a negation – an absence of a possibility.Dichotomies such as mind/body, inside/outside andfeeling/thinking are transgressed when suffering is expe-rienced as the frustration of all aspects of the person. vanHooft (2000) argues that we need to think of bodily pro-cesses as having a goal. Alienation or disintegrationappears since the internal goal of our being is the integra-tion of our lives in the light of meaning and if our livesbecome meaningless, we suffer anomie (p. 219). The nar-rator’s gaze was painfully directed towards their ownbody: I ‘can feel my heart, it hurts’, ‘became a bit clumsy’,‘ran out of steam’ or ‘nothing was left of me’. Observingoneself from the outside was painful: ‘I look squiffy’, ‘mybody was ruined’. The use of these metaphors represents apowerful way to express in common language the realityof physical debility. When patients use a term such asfeeling ‘a pressure’ they are borrowing an idea from thedomain of mechanics. ‘Worn out’ recalls old and thread-bare clothes, ‘absolutely finished’, ‘jumbled up in thehead’, ‘breathless’ and ‘ruined body’ are persuasive meta-phors that evoke the empathy of the listener. Throughmetaphor, these ideas are connected to the body. Theemotional response from a listener is strengthened by the

sense of sharing of experience of the human body andcondition. When patients describe feeling ‘crappy’ or‘pushed aside’, they conjure up a vivid and powerful imagethat provokes an emotional response. We become primedto understand the other’s experience. An emotive meta-phor entails a feeling that is conveyed through themedium of a metaphor in order to enhance and enrichcommunication. These metaphors are transforming afeeling or thought and enabling it to travel through timeback to the primary experience. Metaphors are not inher-ent in the body or its parts; rather, they are interpretationsattributed to it by persons in situations.

Clearly, the experience of suffering reduces a person’sworld as the preoccupation with illness leaves almost notime or space for the whole self. Illness threatens the veryself by forcing unacceptable alterations in personal life.These patients’ experiences were embedded in specificcontexts, often expressed as a kind of complex personalsymbol. One of the informants concluded her story byremarking that ‘the world is shrinking’. The entire envi-ronment seemed to be involved and words for symptomswere used to describe the way the world was altered suchthat the senses could no longer take it in as before. Herwhole life had become disrupted, resulting in the disorga-nization of her self and her world. Serious illness repre-sents disability, the ‘inability to’ engage the world inhabitual ways (Toombs 1988, p. 207).

Independence, strength and vigour, intellectual abilityand a healthy body are valued qualities in contemporarysociety. Our narrators frequently described their experi-ence as quite the opposite. Seeing oneself from the outside– through another’s gaze – may bring awareness of nega-tive social values, and this might exacerbate the pain of analready debilitated patient. If a patient has an ‘unbalancedbody’ or feels ‘jumbled up in the head’, the shame of beingin this condition increases their burden. We do not knowwhat biological effects may be involved in this. The sub-

Table 3. Emotions/feelings/reactions

Words referring to emotions/feelings/reactions Negations

Afraid, afraid of being on my own, anxious, a sense of unreality*,became worse, difficult to watch anything emotional orabsorbing on TV, everything takes more time now, feel lonely,feeling of weakness, felt a pressure, felt bad, felt crappy, feltpoorly, felt put aside, felt sick, felt under the weather, felt verysick, frightened, frustrated*, get irritated about being forgetful,gluttonous, constantly hungry, have to be careful, have grownold quickly, have had enough, insecure, jittery, just wanted tosleep, less patience, impatient, lonesome, lose hope, more afraid,performance anxiety, poorly, sad all the time, someone proddingat you, there was almost a downswing after that, very lonely,would prefer to have died on the operating-table

Cannot go on any longer, could not manage, did not feel well,don’t feel quite well, don’t feel well, don’t feel well mentally,felt nothing, had no desire for anything at all, if you want to dosomething you can’t, my life has become so different, I don’tknow what to do with it, nothing left, there was nothing left ofme, there is nothing left, you become half a man, not whole, notthe same, you can’t get back the life you once had

*Mentioned verbatim twice.

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jective experience of contempt and depreciation of dys-function may trigger the production of neurophysiologicalsigns which are then attributed to the disease process. Weare still far from understanding the way in which thecultural values we communicate impact upon biology andperception.

The patients in this study had all become aware of abodily existence, which made itself felt as the frustrationof needs and desires. Their need of assistance and carefrom healthcare institutions and family members wasconsiderable. In spite of their need to be understood, onlya minority of their words for symptoms would have beentaken up in a medical record. Words for feelings, forexample, would probably only be noted if they fitted intoa diagnosis. The quantity of emotive and metaphoricalexpressions of symptoms that appeared in this study sug-gests an adaptation to the informal situation of theresearch conversation outside health institutions. Theaccounts would certainly have been different if they hadbeen recorded from a clinical consultation betweenpatient and physician.

The dominant model of biomedicine aim at interpretingsigns and symptoms as manifestations of an underlyingbiological reality. But there is no one-way road leadingfrom pathology to perception and then to expression andverbalization. The mystery of transformation from physi-ological expression to verbal information is still awaitingconsideration. Modern medicine presupposes that what isseen or discovered can be expressed fully in words: thatwhich is ‘said’ is presumed to exhaust knowledge ofdisease. Words for symptoms such as: ‘anxiety’, ‘tiredness’or being forced to ‘close off’ point to a multiple levelexperience. They may or they may not represent signs ofthe disease but are, in either case, serious hindrances tosocial intercourse and the patient may fear becoming com-pletely isolated. Reification of symptoms would notresolve this but on the contrary tend to impede under-standing and support.

Words for symptoms say something, affect somethingand are affected by something. The words chosen forsymptoms in this study communicate intense emotionsand important messages about the patient’s situation. Thecontext of this communication shapes multiple meanings,including cultural codes, the pressures of daily life, moralconvictions and emotions. At the same time, the meta-phors challenge biomedical discourse and in that contextrisk to be deemed irrelevant. Biomedical diagnosticconcepts and categories demand a generalized language.However, important instructions are contained in thesymbolic forms of symptoms in individual, social, orbiomedical/hierarchical levels of communication. Words

for symptoms are put into practice within a variety ofsituations and they operate on several levels: individual,socio-cultural and linguistic. Clearly, what symptoms sayis a complicated issue: biology and perception, experienceof distress along with medical knowledge and culturalgoals and meaning are involved and history, power, nego-tiation and interpretation play their role. The art of diag-nostics may in future – both beyond and in refinement ofclassification – integrate a widening of themes to captureall dimensions of human experience and need.

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Symptoms beyond diagnosis – a case study