Week 3 Lecture Slides: Narrative, Identity, and Illness PDF

Narrative, Identity, and Illness Week 3 Johannes Machinya  Narrative, Identity, and Illness How illness "biographical disruption" narratives (Bury 1982) shape patients’...

Narrative, Identity, and Illness Week 3 Johannes Machinya  Narrative, Identity, and Illness How illness "biographical disruption" narratives (Bury 1982) shape patients’ sense of self and identity Illness narratives: The personal stories individuals create to make sense of their experiences with illness. Patients articulate their journey of coping with disease, how it disrupts their lives, and how they attempt to integrate illness into their sense of self. They are key in how individuals understand their identity, especially when illness challenges or reshapes their everyday routines, relationships, and future expectations.  Sociological traditions in analysis of chronic illness Bury: There are two key sociological traditions medical sociologists have used when analysing chronic illness 1. Parsonian conceptions and the sick role Pasorns developed the “sick role” concept Critique of the sick role to describe societal expectations placed on individuals when they become ill. The model is less applicable to chronic Focused on acute illness (short-term, often illness, which does not follow the same curable), where the sick person is expected pattern as acute illness. to seek medical help and recover, Chronic illness involves long-term, eventually resuming normal social roles fluctuating symptoms rather than a clear Regulation to prevent a ‘subculture of the path from sickness to recovery, which sick’ from developing where some people challenge Parsons’ assumptions can claim the sick role when they are not actually ill Chronic illness: Complexity  Sociological traditions in analysis of chronic illness 2. Interactionist tradition Rooted in interactionism, focusing on the day-to-day strategies individuals use to manage symptoms and social interactions This approach is more empirical, highlighting how people reveal or conceal symptoms and how they withdraw from social interaction as a coping mechanism (Davis 1964; Wiener 1975; and Strauss 1975) ❖ However, Bury critiques this perspective for lacking broader theoretical analysis, and argues for an approach that looks at how illness is influenced by broader societal structures and cultural contexts Chronic illness as a ‘critical situation’ (Giddens, 1979) Bury seeks to These disruptions, Bury sees chronic expand beyond like illness, provide illness, particularly descriptive work by insights into the conditions like adopting Giddens’ structures of rheumatoid arthritis, concept of a everyday life by as a form of critical “critical situation”, highlighting how situation, as it which refers to these structures forces individuals to events that radically break down under navigate uncertainty disturb normal, day- pressure. and change in their to-day routines. lives  Chronic illness as a ‘critical situation’ : A disruptive event It disrupts the routine structures that people rely on for daily living – shakes up the established norms and habits that provide a sense of stability and predictability (e.g., norms of fatherhood) Such disruption forces people to re-think their everyday realities – relationships, expectations, and self-identity (e.g., roles of fatherhood) ❖ It brings the individual and those around them face to face with pain, suffering, and possibly death – realities often considered distant or only affecting others Chronic illness also disrupts social relationships, altering the normal rules of reciprocity and support. As the person with chronic illness becomes more dependent, the dynamics of their relationships with family, friends, and broader social networks change. This growing dependency can challenge norms of mutual support and strain relationships. Chronic illness forces individuals to reassess their future expectations and plans. The illness can derail long-term aspirations, creating uncertainty and necessitating a shift in how the person envisions their life unfolding. Bury argues that chronic illness, such as rheumatoid arthritis, should be understood as a form of biographical disruption. This means that chronic illness not only affects physical health but also disrupts the individual’s life story, altering their sense of identity and the way they relate to the world around them.  Biographical disruption Bury see illness, esp. chronic, as a “disruptive event” ❖ BD refers to the disturbance that illness cause in a person’s life, disrupting “structures of everyday life and the forms of knowledge which underpin them” (p. 169) Three aspects of disruption 1. Disruption of taken-for-granted assumptions/behaviour (about body): Illness breaks down the routines and assumptions that individuals have about their health and future. Things previously considered normal, e.g., daily activities or physical abilities, may no longer be possible, causing individuals to confront the unpredictability of their bodies. 2. Disruption to biography – self: Illness requires individuals to rethink who they are. They must adjust their personal identity to accommodate the new limitations imposed by illness, sometimes reworking how they see themselves and their role in society, e.g., someone who identifies as independent might struggle with the need to rely on others. 3. Response to disruption: People must draw on both personal and social resources to cope with the illness, e.g., seeking support from family, friends, or healthcare professionals, and developing new strategies to manage daily life and maintain a sense of purpose despite the illness. Biographical disruption: Onset of chronic illness ❖ Laypeople perceive symptoms differently than medical professionals, and this gap affects how quickly individuals seek help Lack of initial recognition: No one recognised the early symptoms of RA – swollen finger/morning stiffness – just viewed as minor nuisances, attributing them to external causes like physical exertion or activities at home. ❖ Proximal explanations: In the early stages, individuals relied on common-sense explanations, focusing on immediate, external causes (e.g., overworking or household tasks). But as illness progressed, these proximal/external explanations became less plausible. The persistent and worsening symptoms made it harder for individuals to continue attributing their discomfort to temporary or external factors, leading to a need for more serious medical intervention. NB: Bury uses this to illustrate the difficulty laypeople have in recognising the onset of chronic illness, which delays seeking professional help and shifts how they understand the nature of their condition over time.  Insidious onset: Unlike acute conditions, chronic illness “creep up” rather than having a sudden, clear onset, hence people may initially dismiss early symptoms, like aches or stiffness, as trivial or related to everyday exertion Social and biographical impact: As symptoms persist/worsen, individuals gradually realise they are facing a significant health issue, often feeling a sense of uncertainty and confusion. At this stage, they enter “a new social arena where common-sense” understanding of the body and health no longer applies, making the experience of illness difficult to recognise and accept Chronic illness: Limited involvement of significant others in recognising illness: In Personal and the case of RA, Bury found that individuals can hide or downplay their symptoms for a long time, even from their families. Significant others only social get involved in later stages when symptoms are unbearable or cannot be concealed anymore recognition Cultural discrepancies: Particularly for younger women, realising they have arthritis was a shock, as the disease is culturally associated with older age. This disconnect between their self-perception as active (and immune) and the stereotype of arthritis leads to disbelief and anxiety, as it contradicts their life experiences and expectations Legitimating the illness: The gradual emergence of symptoms, which are often common in the general population (e.g., aches and pains), makes it difficult to recognise and legitimise the illness as serious Well at first I thought I'd broken, chipped the bone in the finger, with it being a knuckle. I thought, I bet I've banged it, really, because I do bang my hands a lot sometimes and I thought I'd chipped it and I thought, “oh it'll go off.” It was months, really, before I got round to going to the doctor because we got married in the July and I didn't go and see the doctor before the end of August, beginning of September. I just thought it was one of those things that would clear up. It never dawned on me it would end up like this, (Female interviewee in Bury, 1982, p. 171) Biographical disruption: The problem of uncertainty  Social networks: Supportive network – family, friends, neighbours – provides essential emotional and practical support, which may influence the course of the illness. Social withdrawal: Chronic illness can cause withdrawal from social interactions due to embarrassment or reactions of others. The disruptions caused by illness, e.g., functional limitations, and the embarrassment of disability, can lead to social isolation Biographical disruption: Challenges in the workplace: Workplace presents a significant challenge especially when the nature of work conflicts with limitations Mobilisation imposed by the illness of resources Emotional and psychological toll: Chronic illness not only disrupts practical and social aspects of life but also takes a significant emotional toll. Limited engagement with medical support: Patients may feel reluctant to discuss their emotional and practical hardships with medical professionals, focusing instead on physical symptoms. As a result, emotional and social dimensions of chronic illness may go unaddressed Chronic illness disrupting the role of mothering Chronic illness disrupts the role of mothering, which many women view as central to their identity. Mothering is associated with the concept of "intensive mothering" which considers child- rearing as highly demanding and emotionally absorbing, and when illness arises, it leads to guilt and anxiety as mothers fail to fulfil their role The concept of good mothering is deeply tied to identity, and when illness disrupts women’s ability to fulfil this role, they are forced to renegotiate their ideas of themselves as mothers ✓ They redefine “good mothering” to accommodate illness, lowering expectations but maintaining emotional connection ✓ Those grappling with mental illness, the fear of being seen as inadequate mothers leads to concealing their condition, causing emotional strain. ✓ Those with HIV work to protect their children from stigma ✓ Terminally ill mothers focus on preparing children for life without them ✓ Feelings of guilt, failure, and anxiety are common as illness threatens their ability to meet societal expectations of intensive mothering