Commentators suggest that during an illness, it is not just the body but our very identity that is threatened, and disrupted (Bury, 1982; Charmaz, 1983; Kleinman, 1988).
In this sense chronic illness can be understood as disturbing not only one’s embodied self but “the trajectory of one’s whole life at a number of levels” (Nettleton, 1995: 88). This is shown in Bury’s (1982: 167-82) study Chronic illness as biographical disruption. The study is based on semi-structured interviews with rheumatoid arthritis (RA) patients, and intentionally focused on those who had been recently diagnosed with RA. Bury’s aim was to highlight the complex ways in which the experience of chronic illness can lead to a fundamental rethinking of a person’s biography and self-concept. His contention is that chronic illness throws the structures of everyday life and forms of knowledge which underpin them into disruption (Bury, 1982: 169). This view is echoed by others, for example, Charmaz (1983: 168) in her study Loss of self: a fundamental form of suffering in the chronically ill, describes the participant’s experience of “former self-images crumbling away” due to a variety of chronic diseases. She goes on to note how the experiences and meanings upon which ill individuals have established positive self- images elude them. In time, this leads to a diminished self-concept, that is, a ‘loss of self’
(ibid.).
As Bury (1982) and Charmaz (1983) illustrate, ‘biographical disruption’ and
‘loss of self’ due to chronic illness takes place on many different levels. For example, arthritic pain can instigate “a new consciousness of the body, and of the contingent and tenuous nature of one’s (embodied) existence” (Lawton, 2003: 25). This means that chronic illness brings about a new and vibrant awareness of the body, which “involves a recognition of the worlds of pain and suffering, possibly even death, which are normally only seen as distant possibilities or the plight of others” (Bury, 1982: 169). In addition, Bury (1982) highlights the disruptive effects that chronic illness has on relationships, material and practical affairs. Other writers have also pointed out that our experience of
illness is “fundamentally inter-subjective” (Kleinman et al. 1992 in Crossley, 2000: 86).
This means that it is not just the individual living with an illness, who is affected, but also the lives of family members and others close to the individual. In the case of debilitating illnesses such as rheumatoid arthritis, physical dependency on others becomes a norm and this disrupts “normal rules of reciprocity and mutual support” (Bury, 1982: 169).
Like Bury, Charmaz (1983: 169-70) highlights how a ‘loss of self’ is a multifaceted experience for her study participants. She notes that by virtue of their illness, the participants often led restricted lives, experienced social isolation, were discredited by self and others, and experienced the humiliation of being a burden on others.
The inability to reciprocate in social interactions and the progressive physical dependence on others exacerbate the suffering of the ill individual and affects how the illness is experienced. For example, D’Cruz’s (2002: 413-34) study Caregivers’
experiences of informal support in the context of HIV/AIDS shows the negative feelings associated with being in a position of dependency because of ill-health. Participants in this study noted that they felt the need to reciprocate the help received, either physically or emotionally. This is their way of affirming their social significance, as well as a way of compensating for their predicament. This feeling was articulated by both AIDS patients and their care-givers. Dependency on others also intensifies the shame and other emotions related to being HIV positive, as discussed in Chapter 2. All this points to the complex and overlapping ways in which different aspects of the illness experience (e.g.
emotional anguish, pain, strain on relationships, social isolation, etc.) may reinforce and amplify one another (Lawton, 2003: 26). For example, Charmaz (1983) observed how
‘loss of self’ in one area of her participants’ lives often spiralled into a loss of another aspect of their lives, with serious negative consequences. To illustrate, she notes how stigma associated with a chronic illness causes individuals to experience feelings of low- self-esteem and withdraw from social activities. The latter in turn, may exacerbate feelings of ‘loss of self’, as this “leads to fewer opportunities for constructing a valued self” (Charmaz, 1993: 172).
3.2.1 Does collectivism (Ubuntu) help?
It must be pointed out that the consequences of illness on self and identity, on the loss of self or of control, and on biographical disruption may not be universal (Pierret, 2003: 9-10). Most research on the devastating experiences of chronic illness on self- identity has been carried out among Westerners (e.g. Bury, 1982; Charmaz, 1983; Ezzy, 1998; Fife & Wright, 2000; Williams, 1984). Non-Western philosophies and ways of being in the world may influence how the onset of a serious or chronic illness is experienced and it may influence the meaning of the illness on selfhood. This, in part, is due to the collectivist nature of the social context in non-Western societies (D’Cruz, 2004: 421). In these societies interdependency, for example the Southern African concept of ubuntu, is privileged over Western independence and self-autonomy (Ramose, 2002:
237). Ubuntu is a worldview where “the distinctive collective consciousness of Africans is manifested in their behaviour patterns, expressions, and spiritual self-fulfilment, in which values such as universal brotherhood of Africans sharing and treating other people as humans are concretised” (Khoza, 1994 in Prinsloo, 1998: 41). This philosophy is captured in the common saying “I am because we are: I exist because the community exists” (Gbadegesin, 1998: 293). Therefore, the individual’s illness and its devastating consequences are shared by the collective, especially the family. For example, D’Cruz (2004) in another study The family context of care in HIV/AIDS: a study from Mumbai, India found that familial values underpinned care-giving behaviour towards AIDS patients. The participants expressed “innumerable reasons such as a sense of duty, love, lack of choice, humanitarian concern and social reasons” (D’Cruz: 2004: 421) as motivation for care-giving. All this may cushion the negative impact of illness on self- identity felt by patients in individualistic societies.
3.2.2 What about poverty?
Beyond the cushioning effects of collectivism, living in chronic poverty and its negative consequences or other ‘disruptive life situations’ (Ciambrone, 2001: 517) may also minimise the upsetting impact of a serious or chronic illness on the self-concept.
This is illustrated in Ciambrone’s (2001) study Illness and other assaults on self: the relative impact of HIV/AIDS on women’s lives, in which the participants were
purposively drawn from poor, HIV positive African-American women with drug and other related problems. Despite the fact that HIV infection posed an immediate threat to their sense of self and had a lasting impact on their future plans and goals, retrospectively 71% of the study participants did not consider HIV to be the most disruptive event in their lives (Ciambrone, 2001: 532). This is expressed well by one woman who describes her former violent and abusive intimate relationship relative to her HIV positive status:
I would say the hardest time was the abuse… Because when you are in an abusive relationship, your body’s just dead. It’s just like a robot, that’s doing what it has to do. Compared to just living with HIV, I would rather live with having AIDS and HIV any day compared to being abused… When you are abused you are nothin’, I had nothing. I had no feelings, I had nothing, I was just one cold person.
Ciambrone, 2001: 522
Thus, Ciambrone (2001: 532) and other researchers, especially in poor countries (e.g.
Baylies & Bujra, 2000; D’Cruz, 2002, 2004; Feldman, Manchester & Maposhere, 2002;
Wallace, 2004 in ICW, 2004) conclude that “HIV may be just another in an ongoing string of disruptive events”. In addition, widespread poverty and political problems in sub-Saharan Africa, South Asia and other developing regions mean that illness narratives are sidelined in research in favour of macro-problems, such as:
Extreme disempowering and debilitating poverty; economic recessions, foreign debt, the effects of economic structural adjustments programmes, and massive unemployment; underdevelopment and poor infrastructure; weak leadership, poor governance and corruption; political instability, conflict and violence; pervasive patriarchy, with women discriminated against and disadvantaged; the effects of droughts, floods and pestilence on agriculture; livelihoods and food security; and rampant disease, including malaria, tuberculosis, waterborne disease and malnutrition – and now HIV/AIDS.
Ferreira, 2004: 1
This overrepresentation of macro-issues does not however, deny the existence of individual suffering among Africans or Asians, as this study attempts to highlight. Other similar studies in sub-Saharan Africa show that ‘biographical disruption’ or ‘loss of self’
concepts may well be utilised in the interpretation of the negative effects of chronic illness on selfhood and relationships (see Cardo, 1999). For, indeed, the onset of a major
illness, let alone a chronic one, necessitates a rethinking of one’s established lifeworld and the disrupting effects on selfhood and relationships, regardless of one’s social context and worldview.