Chronic illness time

Abstract

As the term ‘chronic’ suggests, the chronically ill body is one that reorients itself to the ways in which time is perceived, experienced and used, in a multiply of ways. New practices are developed and routines are established to manage chronic illness in personal and social contexts. As rhythms of bodily life change one’s expectations for the future might change, and their relations with other people (who have their own temporal rhythms) might also change. Meanings attributed to past and present experiences and practices, as well as future plans and imaginings, acquire new significance with chronic illness. Through public health and anthropological lenses this thesis investigates some of the intersections between chronic illness and time. In his tone-setting analysis of the ways in which chronic illness influences relationships with and to time, Bury (1982) argued that chronic illness invariably creates a ‘biographical disruption’ for the individual with chronic illness. This thesis provides empirical evidence collected in Australia, including self-reported calendar and clock/ed time spent on managing illness, much of which broadly supports Bury’s analysis. However, this thesis also questions the veracity of Bury’s sure and certain claim; while acknowledging that chronic illness can be and often is disrupting of the biography, I suggest that there is more variety in experiences of chronic illness than Bury’s theory allows. For instance, people may feel their biographies to be initially disrupted, but the profundity of disruption that Bury attends to may absent itself after a time, as the management of chronic illness fades into the background of habitual life. So too, can chronic illness create cycles of disruption even as the illness moves between stable and unstable phases. Alternatively, people may find that the onset of chronic illness was something they had expected, and experience the illness not so much as disruption but as confirmation to their biography. This thesis identifies several ways in which Bury’s thesis may be nuanced and challenged. Using data gathered over a number of different fields, and covering a wide range of illnesses, I show in this thesis that factors influencing biographical disruption, including the type and severity of illness; the stage of life that the individual is in when they become ill; their previous relationships to their body and to time; the self-management behaviour in which they engage; the amount of time they spend on health practices; and the sense ill persons have of their own agency, impact on whether and how much of a biographical disruption chronic illness is to the person. As I will demonstrate throughout this thesis, the importance of time in the experience of chronic illness is not sufficiently recognised by the primary and secondary health care sectors. It is very common, for instance, for a chronically ill person to access multiple care providers – each of whom provide management of illness advice (and possibly medication prescriptions) into a kind of time vacuum – without reference to the ways in which the person’s time is already accounted for – including time spent attending to the advice, management and medication regimes of other health care providers. It is very often the case that a time burden of chronic illness arises from information provided to the patient whose time is assumed to be wholly available. The development of a care plan, which I propose at the close of this thesis, provides a device for enabling those with chronic illness to anticipate and plan for a future where illness will move them into different phases of experience. It also enables aligning of otherwise singularly administered regimes in and through the defining feature of chronic illness – time. Show more