IDENTITY DILEMMAS OF CHRONICALLY ILL MEN

Chronic illness frequently comes to men suddenly with immediate intensity, severity, and uncertainty. Because men contract more serious and life-threatening chronic illnesses than women, experiencing illness causes men different identity dilemmas. This paper explores men's identity dilemmas by studying how men experience chronic illnesses and by looking at how assumptions about masculinity affected their identity. The paper explores four major processes: (1) awakening to death after a lifethreatening crisis, (2) accommodating to uncertainty as men realize that the crisis has lasting consequences for their lives, (3) defining illness and disability and (4) preserving self to maintain a sense of coherence while experiencing loss and change. The data are derived from forty in-depth formal interviews of twenty men, informal interviews with these men, and an extensive collection of published and unpublished personal accounts. The data were analyzed through the strategies of grounded theory.     

Recovering from severe mental illness: mutual influences of self and illness

A growing body of literature on the subjective experiences of people with severe mental illness (SMI) reveals the importance of the experience of self. The current study explored how the course of SMI is related to individuals' subjective experience of self. Bimonthly, comprehensive, semi-structured interviews with 43 people who had been discharged from psychiatric hospitalization were conducted over a 1-year period. Qualitative analysis of the data revealed mutual influences between the experience of self and illness over time. Conceptual and clinical implications of the relation between self and illness are discussed.     

Aging and identity in dementia narratives

Abstract

This article explores the way that senile dementia is represented in contemporary culture, with particular reference to texts which narrate the experience of caring for a parent or spouse with one form of the illness. These narratives raise problematic issues about the materiality of the body and its relation to individual identity, and the unstable relationship between memory and identity in postmodern culture, by drawing on the actual experience of bodily dependency and disorientating memory loss in dementia patients. These speculations about the body, memory and the self are ultimately related in narratives of dementia to the inevitable process of aging and dying and the cultural meanings attached to it. The article places the representation of dementing illnesses within a Foucauldian narrative of surveillance and control in the discourse of aging and death in modern Western societies, redemptive views of illness in western culture and arguments about death in contemporary theory.     

Disrupted Bodies: Experiencing the Newly Limited Body in Stroke

This article explores the intersection of recovery and bodily practices among stroke survivors. Drawing on the extensive literature on the socially constructed body in general, on chronic illness, and on interactionist thought, we explore bodily experience as a mechanism that informs stroke survivors' understanding and practices of everyday life in recovery. We ask a central question: what practical mechanisms does the survivor employ to provide meaning to her or his newly disrupted body? Data gathered from in‐depth interviews with fifty‐one discharged stroke survivors show that they use three specific technologies of bodily management and meaning‐making. These are managing the body within a mind‐body dualism, testing the body in its everyday practices, and orienting to the body as a biographically informed phenomenon.     

Self and other: The importance of social interaction and social relationships in shaping the experience of early-stage Alzheimer's disease

Various factors influence how individuals experience illness. Especially important, however, is the reaction of others whose response shapes the meaning of the illness for the person who is ill, and the impact it will have on her or his sense of self. Adopting a symbolic interactionist perspective, and drawing on data obtained from in-depth interviews conducted with nine individuals living with early-stage Alzheimer's disease, this paper examines how others’ reactions to and treatment of persons living with the condition can influence how they experience dementia. The findings reveal that the majority of the participants did not believe others’ treatment of them had substantially changed, nor did most express the level of concern about the possible negative response of others reported in other studies. Within their relationships and social interactions participants received the essential support, cooperation, and encouragement that enabled them to create meaning in life and sustain identity.     

On the altered appetites of pregnancy: conceptions of food,body and person

Ethnographic interview data recording the experience of alterations in appetite in pregnancy, notably aversions to and cravings for food are reported. These data are interpreted in the light of symbolic interactionist insights into the process of self-indication, the process whereby people's sense of self and identity entails the attribution of meaning to the world in which they find themselves, a world that includes their own bodily self. Aversions appear unequivocally identifiable, but doubts arise about cravings – doubts that are conceptualised with reference to a sense of body, of self and conception of moral worth.     

Maintaining identity in elderly couples with chronic illness.

With the onset of chronic illness, it has been necessary for these couples to evaluate and redefine their separate as well as merged identities. As each of these individuals sought to realize a mature identity, role adjustments were required. Although not every member of the two illustrated couples had been able to accept the effects and concurrent responsibilities of chronic illness, the nurse practitioner was in a unique position to provide guidance. By reinforcing the importance of healthy identity states, these clients were able to merge temporarily and respond to their partner's basic needs, exchanging a sense of mutual satisfaction, and then to separate into distinct individual identity states. A major task of the older adult is to re-evaluate identity in light of the roles currently being played in life. Through this process, a workable philosophy of life and death should evolve. Most older people engage in a life review of accomplishments and failures, seeking to integrate the diverse elements to obtain an acceptable view of their life's worth (Kaluger, 1984). Couples experiencing chronic illness must reconsider the consequences of this illness state to adequately formulate healthy individual and merged identities. The role of the nurse practitioner is essential in providing guidance for adapting to the life changes confronting elderly couples with chronic illness while maintaining healthy individual and merged identities.     

The lived body in dementia

Little is known about how people with dementia live day to day with this illness and the meaning it has for them. To explore this question, three in-depth interviews and participant observation were conducted with nine people experiencing mild to moderate dementia (MMSE 16–23) and their family caregivers. An interpretive phenomenological analysis revealed how dementia symptoms were experienced in and through the lived body: (1) “Being slow” is about the body slowing down as taken-for-granted activities become halting and tentative; (2) “Being lost” is about being unable to find ones way in an unfamiliar world; and (3) “Being a blank” is about being in an empty world wherein meaningful habits and practices fall by the wayside. These findings challenge the problematic mind–body dualism that pervades current understanding of dementia, thus opening the possibility for developing a vocabulary of care that takes more complete account of the lived experience of dementia.     

Disability and Chronic Illness Identity: Interviews with Lesbians and Bisexual Women and Their Partners

Disability rights activists and cultural workers are articulating disability identity and culture. Through interviews with lesbians and bisexual women with disabilities or chronic illnesses and their partners, the present study examined disability/chronic illness identity on the level of individual, couple, and community. Participants shared differing perspectives about how disability/chronic illness identity relates to other aspects of identity, and about whether disability/chronic illness identity is fluid or constant. They described several challenges they have encountered in developing disability/chronic illness identity. Couples talked about developing boundaries and balance in their relationships, and about how disability or chronic illness has strengthened their relationships. A number of participants spoke about identity as intimately linked with community. Implications for community building are discussed.     

Embodied Fluidity and the Commitment to Movement: Constructing the Moral Self through Arthritis Narratives

While biomedical research reifies bodily movement in the lives of people with chronic illness as “functional mobility,” our analysis of biographical osteoarthritis narratives uncovers a moral commitment to movement as both a moral imperative and a technique to preserve a self threatened by the limits arthritis places on daily life. A content analysis of twelve interviews with arthritis sufferers shows that, in addition to the practical and emotional challenges of living with arthritis, these actors face the daily challenge of displaying their understanding of embodied fluidity—the timely and fluid movement through time and space—as a virtuous practice. Our informants use the movement mandate—the commitment to move despite the pain it may cause—to produce themselves as competent social and moral actors sacrificing the demands of their bodies to meet social expectations, and they conduct this performance in front of several audiences: the self and specific and generalized others. For these informants, in both private and public realms, the experience and the management of pain and physical limitation are profoundly social and accountable matters, as they affect interactions with others, their own social identities and moral integrity, and their relations with self as they seek to balance their arthritis pain with their past, present, and future self‐concepts.     

More than just pain?! A systemic compass for working with people with chronic pain

Over one in four people in Belgium experience severe physical pain. One in 10 people develop chronic pain every year worldwide. Treatment of chronic pain is based on the biopsychosocial model. Scientific views state, among other things, that pain is a threat to the social self, which is an interesting point of entry for (mental) health-care providers. Conversations with people with chronic pain are always about more than just their pain; they are interesting and cover a lot of ground. Talking about feelings of being hard done-by, clarifying the complexity of the situation, examining the body as an autonomous entity, offering psychoeducation as a hypothesis, and a general attitude of not-knowing form a compass that allows us to attune to the patient and not take up an advisory position. Living with chronic pain requires negotiating with the outside world, being allowed to care for and consider the body, and being allowed to differ from the norm and still fit in enough in a world where the body is just a background figure. An identity transformation and the effects of trauma are described. We meet Eddy and Anne, both dealing with chronic pain, who bring theory alive. The author gives an insight into her personal search and struggles as a psychotherapist introducing systemic psychotherapy in chronic pain patients.     

Social Stratification and the Body: Gender,Race, and Class

This article introduces the study of social stratification and the body in sociology. Two major fields of social inequality, race and sex, are characterized by visible, physical markers (such as skin tone or body shape) that people use to attribute meaning to the bodies of those around them. Class, on the other hand, offers far subtler bodily clues to the casual observer. Drawing on studies of racialized and sexed bodies, this article derives two principles for studying bodies, class, and social stratification more broadly. First, the relationship between bodies and inequality is bidirectional and co‐constitutive: while beliefs about the meanings of bodily difference are used to legitimate social inequality, preexisting inequalities also shape the appearance, health, and capabilities of the body. Second, the mechanism by which bodily difference is used to justify inequality is the ideology of self‐control: claims about the bodies of marginalized groups tend to frame them as reflecting a lack of self‐discipline, thereby “proving” their moral or evolutionary unfitness for power. The article ends by identifying emerging areas of study that promise to advance the study of embodied stratification and by highlighting the continuing centrality of intersectisonal theories of difference and inequality in embodiment research.     

Honouring identity through mealtimes in families living with dementia

This paper reports the findings from the first year of a longitudinal grounded theory study examining the experience and meaning of mealtimes for persons living with dementia and their family partners in care. Dyad and individual active interviews were conducted with 27 families in the early to mid stages of dementia. Mealtimes provided a window for us as researchers into the broader lives of families living with dementia, reflecting the essence of “who they are”. Families experiencing dementia used mealtimes as a way of honouring identity, being connected, and adapting to and accepting an evolving life. This paper focuses on the theme of honouring identity and the role that mealtimes play in that process. Our findings suggest that individual and family identity are honoured through protecting dignity while struggling for autonomy, having meaningful roles, and reaffirming a sense of self in the world. Implications for theory and practice are discussed.     

What to Expect: Information and the Management of Uncertainty in Parkinson's Disease

The onset of a chronic illness such as Parkinson's Disease (PD) demands an urgent response to life's fundamental questions. General practitioners (GPs) who care for people with PD may also face anxieties, but these affect their professional rather than their personal lives. However, uncertainty at whatever level requires managing. Both patients and GPs adopt various strategies to resolve their difficulties. One aspect of this process concerns coming to understand, and explaining what to expect of, the disease. Using data from in-depth interviews with people with PD and a separate group of GPs, this paper explores how the differing experience and management of uncertainty by both parties may, if unappreciated by doctors, hinder effective communication between them. Conversely, an imaginative understanding of what PD means may help transform people's experience of the illness. Training GPs to develop skills in understanding the special uncertainties of PD is considered.     

Self-identity and the arts education of disabled young people

Overall, little is known about the ways in which disabled children and young people produce artwork or how they experience arts education. Neither is it known to what extent they are encouraged to produce work that engages with the expressive development of a sense of self that incorporates experiences of impairment and disability. This article is based on my recent PhD research which has investigated the ways in which a group of disabled young students are being enabled, via their arts education, to engage in a process of self-realisation whereby negative and oppressive perceptions of disability have been identified and addressed via their artwork. Whilst current post-social model discourses that emphasise the multiplicity or plurality of identity are acknowledged, my research has demonstrated that disabled young people can be empowered through the expression of the lived experience of impairment and disability and thereby encouraged towards a positive, inclusive and potentially multi-identity perspective.     

Tattoo Narratives: The intersection of the body,self‐identity and society

Drawing upon Frank's (1995) discussion of the personal and social aspects of embodied storytelling, this paper considers the tattoo as a form of visual communication created within a multiplicity of contexts. Based on in‐depth interviews with eight tattooed men and women, the focus of this article is the stories that these individuals tell about their tattoos. I argue that the tattooed body is a distinctively communicative body. It has a great deal to say, not only about the identity of the wearer, but also about the culture in which she lives. I conclude with some reflections on examining the tattoo as a conceptual latchkey—a tool that may enable researchers to begin to unlock the complicated relationship between the body, self‐identity and society.     

Experiences of volunteering: A partnership between service users and a mental health service in the UK

The aim of the study was to investigate how people with serious mental illness perceived the experience of volunteering for the health care organisation in which they had received a service. The study took a qualitative approach and in phase one, eleven service user volunteers were purposefully sampled and interviewed. In depth interviews were analysed using grounded theory. This paper describes the findings from phase one, and highlights the following themes to represent the volunteering experience: 1) rehearsing for a new direction; 2) treading carefully at first; 3) discovering my new self; and, 4) using my experience and extending relationships. These themes further support a tentative theoretical framework that considers supported volunteering to enhance recovery because it fosters positive risk taking and gives individuals a valued identity that integrates their mental health experience. In phase two, this framework will be tested with service users in more diverse volunteer positions. The findings of my study suggest that mental health services are in a unique position to build partnerships with service users to support their recovery and journeys toward employment by providing opportunities for volunteering.     

Social Capital for Vulnerable Groups: Insight from Employed People Experiencing Homelessness

Abstract

Social capital is a term that has evolved within the social sciences, and has been presented as a mediating factor in how people experience the social environment. In 2008 and 2009 we conducted one-to-one interviews with 61 people experiencing homelessness in an effort to investigate the concept of “pathways” from homelessness. Our findings show that social capital was not just about making positive friends or improving social relationships. Instead, personal issues of identity, self-esteem, and individualization were contributing factors to developing social capital; and social service agency practices could contribute to how these are experienced. Further areas of research are discussed along with the application of research findings to other vulnerable populations.     

Social transformation,collective categories,and identity change

Changes in collective categories of identity are at the core of social transformation. The causal linkages among identity change, institutional change, and change in modes of practice are, however, complex. Developing and adapting ideas from Pierre Bourdieu's work, this article shows the coexistence in tension of a plurality of elements within each collective identity category. On this basis, it proposes a typology of responses at the level of identity to socio-political change. This allows an explanation of patterns of identity change in terms of wider social processes and resource distribution, while remaining open to the sense and complexity of the individual's experience and the moments of intentionality that arise when individuals face choices as to the direction of change. The worth of the model is shown by analysis of modes of identity change in a society now experiencing radical change in socio-political structures, namely post-1998 Northern Ireland.