Engaging in the Disablement Process over Space and Time: Narratives of Persons with Multiple Sclerosis in Ottawa, Canada

Article excerpt

Introduction

Multiple sclerosis (MS) is a progressively worsening chronic disease of unknown etiology for which there is as yet no cure. It affects primarily the central nervous system and has varied symptoms ranging from fatigue, balance problems and weakness to visual disturbance, bladder and bowel problems, depression, cognitive impairments and pain (Aronson et al. 1996). Diagnosis is difficult, usually being by residual attribution after other possibilities have been excluded, and often occurs years after the onset of initial symptoms (Robinson 1988). MS is bewilderingly diverse in its pace and severity. This encapsulates the biomedical reality, but it reflects none of the possible social outcomes of developing the disease. Many people with MS have to cope with reduced mobility while adapting to changing social, personal and familial roles. Others may have to deal with relatively mild and only slowly worsening consequences. MS often strikes individuals when they are young and at a stage in their lives when they are raising a family, launching a career or both (Dyck 1995). Those who develop a chronic illness such as MS have often already defined an identity, established social relationships and have determined, to a substantial degree, the form and patterns of their life (Brooks and Matson 1982). After a diagnosis of a chronic illness, such as MS, some or all of these conceptions may have to be reconstructed (Fife 1994; Garro 1994). Individuals may experience a loss of self-identity (Charmaz 1983), 'biographical disruption' (Bury 1982) or 'changing lifeworlds' (Dyck 1995), which consequently results in altered 'social careers' (Robinson 1990). It brings the meaning of the illness to the individual into context, prompting those men and women who have developed MS to deal with the disruption, in place and over time.

We know relatively little about how people who are affected by MS deal with the challenges posed by sociospatial barriers in their environments of daily living. Nor do we know how they seek to alter physical spaces to minimise the impact of these obstacles as the disease progresses and their experiences of this change. We seek to examine how people who develop MS engage in the process of disablement both over time and over space. Using a qualitative interview format, we recorded verbatim the narratives of 15 men and women diagnosed with MS. In interpreting these narratives, we concentrated on the following research objectives: (1) to explore how those who have been diagnosed with MS cope with their disease, both in terms of the bodily experiences of becoming a chronically ill person in society and space and in terms of how they cope with changing relationships, changing identities and challenges in their physical environment; and (2) how they engage in, with and through the process of disablement over time and space as a result of these changing social and spatial relationships.

While not all 15 respondents followed the same disease trajectory (i.e., relapsing-remitting or progressive MS) (Aronson et al. 1996) or engaged in the process of disablement in the same way, there were sufficient similarities in the strategies employed by the respondents to illustrate that our research objectives were indeed relevant. This follows Pollock et al.'s (1990, p. 300) finding that people adapt and respond to chronic illnesses in different ways. They view adaptation to chronic illness to be 'a complex process and implies a balance between the demands of the situation and the ability of an individual to respond to the demands'. In this article, we pay particular attention to the abilities of the participants to cope with becoming impaired and the resulting physical, social and economic changes that result as a form of adaptation. Thus, not only will we illustrate the ways in which they engaged in and through the process of disablement both spatially and temporally, but we will also examine their responses to such significant changes in their lives and lifeworlds by looking at their processes of adaptation and the resulting coping strategies. …