Drawing on critical feminist narrative inquiry, we explore illness narratives of women cancer survivors living in Southern Central Appalachia via a daylong story circle (n = 26) and individual interviews (n = 3). In our article, we argue that participants functioned as illness genealogists as a consequence of their central location in families, as well as their location in a place (Southern Central Appalachia) characterized by what we call “cohabitating morbidities.” We coined this term to represent the experiences of women survivors living with multiple, sometimes simultaneously occurring illness experiences in their family systems. Finally, we reveal and explore rules that guide their survivorship experiences and storytelling, contending that study participants preserve their central location within family systems by decentering their own survivorship experiences and stories.

The aim of the thesis is to explore socially shared ideas about mental illness in everyday contexts. Drawing on social representation theory, organizations for users of mental health services and self-help groups are regarded as communities where social knowledge is constructed that makes intersubjective understanding of illness experiences possible. In order to investigate such knowledge as a resource in joint construction of meaning, a theoretical model is introduced where a distinction is made between a discursive level of situated ‘representational work’ and an underlying level of sociocultural resources. A focus group study was carried out with 27 participants who label their health problems as anxiety, depression or bipolar disorder, and were members of service user organizations. The focus group conversations were analysed with regard to thematic, interactional and discursive features to answer the questions: 1) how is mental illness represented, 2) how is the mentally ill person represented, and 3) how are others’ views on mental illness represented. The results show how mental illness is represented as a complex phenomenon that is contextualised to a number of frames of reference. Further, the analysis identified different types of resources that are utilized in representational work: local knowledge of the communities, medical concepts, different explanatory models, narrative structures, metaphors and conceptual dichotomies. It also revealed dialogical properties of the representational work that have rhetorical functions for self-presentation as a team performance. The discussion suggests that widely shared resources are put to use in group- and situation-specific representational projects, and that representations that are produced in group discourse can be characterised as ‘polemical social representations’ that respond to a double stigma of mental illness in everyday life where mental illness is regarded as a sign of ‘weakness’ as well as ‘otherness’.

Cette étude porte sur la dimension intersubjective de la souffrance qui affecte le rapport du souffrant à son corps, au temps et à l’espace vécus de même que son identité narrative et sa mémoire narrative. Mon argument principal est que la voix narrative constitue le rapport intersubjectif dans les récits de maladie que les proches écrivent sur leurs partenaires souffrant de cancer de cerveau ou de la maladie d’Alzheimer. Ma discussion est basée sur l’éthique, la phénoménologie, les théories de l’incorporation, les études des récits de vie, la sociologie et l’anthropologie médicales et la narratologie. L’objet de mon étude est l’expérience incorporée de la souffrance dans les récits de maladie et je me concentre sur la souffrance comme perte de la mémoire et du soi narratif. J’analyse le journal How Linda Died de Frank Davey et les mémoires de John Bayley, Iris: A Memoir of Iris Murdoch et Iris and Her Friends: A Memoir of Memory and Desire. J’explore comment les récits de maladie constituent le rapport éthique à l’Autre souffrant de la rupture de la mémoire. La discussion de la voix est située dans le contexte des récits de vie et se propose de dépasser les limites des approches sociologiques et anthropologiques de la voix dans les récits de maladie. Dans ce sens, dans un premier temps je porte mon attention sur des études narratologiques de la voix en indiquant leurs limites. Ma propre définition de la voix narrative est basée sur l’éthique dans la perspective d’Emmanuel Levinas et de Paul Ricœur, sur l’interprétation du temps, de la mémoire et de l’oubli chez St-Augustin et la discussion levinasienne de la constitution intersubjective du temps. J’avance l’idée que la “spontanéité bienveillante” (Ricœur, Soi-même comme un autre 222) articule la voix narrative et l’attention envers l’Autre souffrant qui ne peut plus se rappeler, ni raconter sa mémoire. En reformulant la définition augustinienne du temps qui met en corrélation les modes temporels avec la voix qui récite, j’avance l’idée que la voix est distendue entre la voix présente de la voix présente, la voix présente de la voix passée, la voix présente de la voix future. Je montre comment la voix du soignant est inscrite par et s’inscrit dans les interstices d’une voix interrompue, souffrante. Je définis les récits de vies comme des interfaces textuelles entre le soi et l’Autre, entre la voix du soi et la voix du souffrant, comme un mode de restaurer l’intégrité narrative de l’Autre. / In this research I examine the intersubjective dimension of suffering which affects the relation of the sufferer to his/her lived body, time and space, as well as to his/her narrative identity and narrative memory. I argue that narrative voice constitutes the intersubjective relation in illness narratives that caregivers write about partners or spouses who suffered from brain cancer or Alzheimer’s disease. My discussion draws on ethics, phenomenology, theories of embodiment, life-narratives studies, medical anthropology and sociology, and narratological theory. The object of my study is the embodied, subjective experience of suffering in illness narratives and the main focus is cast on suffering as loss of memory and loss of the narrative self. I analyse Frank Davey’s diary How Linda Died, and John Bayley’s memoirs Iris: A Memoir of Iris Murdoch, and Iris and Her Friends: A Memoir of Memory and Desire. I explore how illness narratives as embodied stories constitute an ethical relation to the suffering Other who bears a lived impossibility of remembering. I situate the discussion of voice in the context of life-narratives and aim at filling in the theoretical gaps of sociological and anthropological approaches of voice in illness narratives. For this, I examine and question narratological studies of narrative voice and focalization. My own definition of narrative voice is based on Emmanuel Levinas’s and Paul Ricœur’s ethics, Saint Augustine’s interpretation of time, memory, and forgetfulness, and on Levinas’s discussion of time as intersubjective relation. I suggest that “spontanéité bienveillante” (Ricœur, Soi-même comme un autre 222) modulates narrative voice as the attention towards the suffering Other whose voice is silenced. Reformulating the Augustinian definition of time that correlates the temporal modes with the reciting voice, I suggest that through the ethical stance towards the Other, voice is distended between the present voice of voice present, the present voice of voice past and the present voice of voice future. I show how the voice of the caregiver is inscribed by and inscribes itself in the interstices of an interrupted, suffering voice. I define life-narratives as textual interfaces between the self and the Other, between one’s own voice and the sufferer’s voice, as a mode of restoring the Other’s narrative integrity.

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