Soled, Derek

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Oxford University Research Archive

226Essay 2. Illness Narrative as a Lens into Societal Understanding. Derek SoledEssay prompt, same as for essay 1: ‘What can illness narratives and medical case historiestell about society?’A severe illness is a gaping rift in one’s life story, one with significant effects on the sufferer,whose experience is forever etched in memory. In medical anthropology, scholars often useillness narratives to explore how individuals stitch this gap. Such narratives embody thememory of an illness experience. This is a contrast to traditional medical case histories thatpresent patients’ illnesses as generalized diseases with a focus on the characteristic symptomsand relevant pathological processes. Illness narratives differ from medical case historiesbecause narratives specifically focus on the patient's subjective experience and understandingof the illness, and they can highlight the social and cultural factors that may have influencedthe symptoms (and their interpretations). Indeed, illness narratives are ‘performed’ bypatients who are characters in their ongoing stories, actors constantly influenced by theirsocial environments. Thus, studying illness narratives and medical histories can provideinsights into a patient’s society, specifically 1) how group experience moulds individualexperiences, 2) how cultural values and social relations shape the body’s illness experience,3) how societal influences may trigger the body’s memory of an illness, and 4) how thesociety helped create illness. Together, these narratives offer a lens into a patient’s sociality,as well as providing a more holistic understanding of a patient’s condition, illustrating theultimate causes of suffering and helping determine more productive ways to help the patient.First, illness narratives can reveal how a collective, societal experience mouldsindividual experiences. Consider the ethnographic work of Vieda Skultans (1997) concerningthe health of the Latvian people after the collapse of the Soviet Union. As Skultans notes,‘These accounts of the Soviet invasion and its long aftermath constitute a hybrid genre whichunites personal and collective experience’ (ibid.: 761). While studying neurasthenia (an ill-defined medical condition characterized by lassitude, fatigue and emotional disturbance),Skultans observed that the narratives she heard were intended by their authors to provide aliteral representation of the past, but the stories were actually potent carriers of literary andcultural meanings, which confirmed personal identities and national loyalties; in other words,the illness narratives brought together the past, present and future. Skultans describes how herencounters with life stories in Latvia encompassed violent and terrible events that occurred227half a century ago, which the Latvians use as foundations to construct their life stories,functioning as a catalyst for their anxieties about and hopes for the future. Narrators drewupon stories and fragments of stories to translate their brutal tales into a meaningful story,and Skultans could identify cultural values and knowledge of identity through individualaccounts. Moreover, the narratives functioned as testimonies to both personal and socialmemory. Informants wanted to speak about their arrests, imprisonments and deportations, andwhen they felt they could not offer greater insights, they would send Skultans to someonewho could. Skultans was ‘taken aback by the power and fluency with which many peoplespoke and sustained literary quality of their narratives’ (ibid.: 763). Testimonies came fromwitnessing awful events, but in doing so, the informants speak from solitary experience andyet ‘paradoxically, also speak for others’ (ibid.: 766). As Arthur Kleinman (1988) repeatedlyimplies throughout his book on illness narratives, it is as though there is sedimentation ofsocio-political-historical realities in the experiencing body. The fault lines of societal traumaare commemorated in the lived experiences of individuals who are suffering.Most of the narratives that Skultans heard involved the informants framingthemselves as heroes or heroines in a romantic quest, and they relied on literary traditions todo so. As Skultans comments, ‘Many Latvian narratives appear to be underpinned bymedieval paradigms of romance and quest which would be familiar to all my informantsthrough collections of fairy tales’ (1997: 768). For instance, Milda, a country woman fromnorth Vidzeme, used a biblical paradigm to hold her narrative together: ‘We travelled fortydays and nights in cattle trucks…we were hungry the first day, we were hungry the secondday, on the third day we were no longer hungry, only thirsty’ (ibid.: 771). The Israelites wereforty years in the desert, Jesus was forty days in the wilderness, and the three days of hungerrecall the three days between Christ’s crucifixion and his resurrection. In another story, therewas an element of fantasy and quest. Sent to Siberia in exile, Regina describes how‘somewhere in the distance I could see a little light shining… And I walk some more and runafter that woman [by the light] […] Suddenly someone screams ‘Regina!’ and as I go insidethe light falls on me and she [the woman] recognizes me’ (ibid.: 774). These tales becomealmost interchangeable in their form, as they follow the same pattern. In the stories, theLatvian people approach and move away ‘from the desired goal state [of independence out ofpast suffering] …to achieving a sense of directionality’ (ibid.: 768). It is through thesecommon narrative forms that one can better understand the personal and social memory of agiven people within a society, as well as their collective experience.228Secondly, illness narratives and medical histories reveal how cultural values andsocial relations may manifest themselves in the sick body. As Kleinman notes, ‘embodiedmemory emerges through the interaction of culture, structure, and the body, realised through“‘sociosomatic processes” that shape everyday embodied experience’ (Kleinman 1988: 36)and can be learned through narrative representations of illness. For instance, consider ByronGood’s ethnographic accounts (1994) of people suffering from seizure disorder in Turkey.The study was initially designed to look at the prevalence of epilepsy and the social disabilityassociated with it, yet, through the stories he heard, Good learned much more about thesufferers. He conducted one interview with a lady named Meliha Hanim. When asked howher illness (‘fainting’ spells) began, she said that when she was a young woman, she hadresisted her father’s wish for her to marry a specific man and instead chose another husbandfar away. When ‘she saw her father with a knife in his hand, she received a “shock,” she wasfrightened, and from that day until today, she has been fainting’’ (ibid.: 136). This woman’sstory revealed more than a traditional biomedical diagnosis. Questions arose as to whether thewoman’s ‘fainting’ was caused by epilepsy or some culturally specific form of the diseasethat biomedical models label epilepsy, or whether her episodes stemmed from the initialpsychological trauma or some other medical condition. Note that Meliha never even used theword ‘epilepsy’ in her narrative. Her use of the word ‘fainting’ instead of ‘epilepsy’ revealssomething about the society in which she lives, as ‘fainting is associated with a more generalsemantic domain that includes fainting occurring in ties of acute distress or in the context of alife of suffering, and is less stigmatized than the term “epilepsy”’ (ibid.: 136).The narratives heard would also frequently take a common form like that of Meliha’s,as narrators would ‘emplot’ themselves in a distinctive cultural form rooted in Turkishpopular medical culture in which there was a major emotional trauma that produced futurefainting. From this study of seizures in Turkey, other ethnographies reveal more of thesociety’s traditional folklore and beliefs. For instance, a man by the name of Kerim shared hisfainting stories with obvious spiritual influences (jinns) that he credited to his illness: ‘Asound came from the cat, like a new born baby was crying … Before, one of our friends hadgone to that place [with the cat] … as a joke they told him there is a jinn there … soon after Ifell down [in a seizure] …which saved me from a hot stove nearby where I would haveburned myself’ (ibid.: 157). This story illustrates how a society’s conventional and traditionalbeliefs may shape perceptions of how a condition began.The way an illness narrative is told can also reveal power relations, as exemplified insome of the ethnographies from the same seizure study in Turkey. One instance concerned a229woman named Emine, a low-class female whose illness narrative was told by her morepowerful sister-in-law. As Good notes, ‘Emine’s voice was appropriated by the family. Shewas not allowed to tell her story, perhaps even to have a story. She was the daughter-in-law,an outsider in a powerful family, only a year past being the youngest bride. Her story evokeda previous husband. She was fat. She had pain’ (ibid.: 160). Such a story, and many like it,informed the listener of local power relations, and how relations of power and gender areexpressed not only in the story’s structure but in its point of view as well. Good’s mainargument is that illness cannot be represented all at once or from a single vantage point, asillness is a ‘network of perspectives’ (ibid.: 157). Listening to these narratives and thecommon themes of how one ‘emplots’ oneself in a given narrative and questions the future isindicative of the social and institutional relationships and practical activities in that society. Itmakes one question what the true relationship is between a story and actual illness, showinghow experience is cultural to the core and influenced by societal networks, beliefs andtraditions.Thirdly, illness narratives and case histories may reveal not only how suffering issituated in an individual’s world, but also how it might be triggered by broader societalinfluences. Those who were severely ill at one point in their lives will struggle to be fully‘healed,’ as a severe illness will leave an experience that is hard to shake. There is a memory(revealed by illness narratives) that is etched in the present (and embedded in currentexperiences), and the past comes into the present through forms of ‘sensation’ learned duringthe illness. For example, consider Eli’s ethnographic work (2016) examining Israeli womenwho had recovered from eating disorders. Eli notes how one of her subjects, Grace, had to eatevery five or six hours, or else her body would give her a terrible malaise, with shivering,sudden hypoglycaemia and a sense of almost fainting. It was as though her body‘remembered’ the pain of her former anorexia even in the moments when she consciously didnot. In this instance the drive for food was internal rather than external, but in other cases,external societal influences are the drivers of body remembrance. In the case of Tamar, arecovered anorexic, social pressure to exercise caused her body to remember her troubledpast. She and her partner started a new training programme, years after she was classified as‘recovered,’ until one day she realized what she was doing to her body: ‘I said, like, wheredid you bring yourself? What are you doing? Run away; this is fire. And that moment I justquit … And then the central tenet of my life occurred to me – you have the virus, be carefulnot to trigger it’ (ibid.: 75). Embodied memories of an illness, like an eating disorder,230constitute a mode of dynamic integration, bridging the past disorder with present-dayrecovery and vigilance.Many severe disorders can in fact operate like a virus, such as Tamar describes. Whileone may be ‘healed,’ the sickness is simply dormant until the right societal influences ignite itagain. What illness narratives thus reveal are not only how a disease manifests itself in one’sown world (such as Grace and the need to eat at set time intervals), but the societal-cum-sensory pressures that may activate it. Of all the women interviewed, there was a salience ofthe social milieu in which their eating disorders developed, namely the Western ideal ofthinness. The more women were exposed to this ideal (watching movies, shopping, etc.), thegreater tendency there was for the body to ‘remember’ the past eating disorder and for theindividual to relapse. There was also a commonality with how the women remained vigilantagainst their disorders reoccurring when other positive societal values (like motherhood)were placed before them; in Israel the mark of ‘responsible’ citizenship for expectant mothersis extensive engagement with foetal genetic testing, measuring and continuous monitoring ofthe body. Thus, ‘since motherhood is constructed as the path to ‘good’ feminine citizenship inIsrael, such discourses and practices shape girls’ attention to and interpretation of embodiedexperience’ (ibid.: 80-1). What these narratives inform us as listeners are the societal andsocial pressures that trigger the body to remember and react. They also reveal ways in whichthe body may respond outside of conscious control, thus having significant implications forhow society may influence individual agency for those who were previously ill.Finally, when they are shared with others in society, illness narratives can provide away for individuals to find meaning in a disorder and gain insight into how society may havehelped create the sickness. The key ethnography that drives this point is that by Steffen(1997). Through various interviews with members of a Danish organization of AlcoholicsAnonymous (AA), one can see the purpose of illness narratives in merging individual andgroup experiences in a therapeutic process that gives meaning to the individual sufferers’lives. As Steffen notes, ‘The telling of life stories in AA illustrates that personal narrativesare neither mere reflections of life as lived nor made-up fiction. Personal narratives areproducts of complex interactive social processes, and they constitute powerful and dynamicmeans of communication’ (ibid.: 110). In this work, Steffen recounts short summaries ofseveral individuals who lost part of their lives due to excessive drinking. After each narrative,together they would recite the prayer: ‘G-d grant me serenity, to accept the things I cannotchange, courage to change the things I can, and wisdom to know the difference’ (ibid.: 103).Telling a story helps an individual process what happened, processing events being the first231step towards recovery; such openness is a therapeutic necessity as well as a moral duty formembers, who find solace in knowing that their story is quite similar to the stories of thosearound them.Moreover, the AA narratives reveal that the same social experiences of loneliness andworthlessness (regardless of an addict’s class and background) affected their illnesses andtheir views of themselves. Implicit in the narratives is the idea that society does not prioritize‘openness,’ and thus the AA setting highlights a major cultural value about what informationdeserves to be made public and what kept private. Accordingly, illness narratives provide anopportunity to see the common thread in situations that are all the result of having the samefeelings of being shunned by society (exemplified through the homogeneity of most stories),thus revealing the societal tensions and ailments that may indirectly cause suffering. Stories‘begin in the experience of one person, but others make it related to themselves and give itnew uses and interpretations’ (ibid.: 103). Illness narratives reveal what people in a givensociety see as within their control (and what is out of their control, such as the AA membersdescribed), and how they might find meaning in their lives through collective suffering andcontrolling what they can.Illness narratives are performative acts in which individuals present their stories andexperiences surrounding their condition. The narrative ‘emplots’ human action in a story with(often) no conclusion. By contextualizing meaningful events, illness narratives contribute tothe understanding of individual experience by showcasing social relations and cultural values.In this regard, they offer much more than a brief medical history of a patient; instead, theyoffer patient perspectives not only about the illness but about the patient’s perceived role insociety. They also allow for a better understanding of the ultimate causes of a disease thatcannot be boiled down to mere pathological description. Finally, they demonstrate howsociety becomes embodied in illness, and which societal values may outweigh others in theshaping of an illness experience. Narratives show how collective societal experiences mouldindividual experiences, how values may embed themselves in the body in periods of sickness,and how suffering is tied to larger societal triggers.ReferencesEli, K. (2016). ‘The Body Remembers’: Narrating Embodied Reconciliations of EatingDisorder and Recovery. Anthropology & Medicine 23(1): 71-85.Good, B. (1994). Medicine, Rationality, and Experience: An Anthropological Approach.Cambridge: Cambridge University Press.232Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition.New York: Basic Books.Skultans, V. (1997). Theorizing Latvian Lives: The Quest for Identity. Journal of the RoyalAnthropological Institute 3: 761-780.Steffen, V. (1997): Life Stories and Shared Experience. Social Science and Medicine 5 (1):99-111.

Essay 2. Illness narrative as a lens into societal understanding

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Essay 2. Illness narrative as a lens into societal understanding

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