The making and remaking of invisible disability : Health experience and the layered reality of everyday life in the remaking of a place of sickness named lupus

Abstract

This thesis explores the everyday life experiences of people with an invisible long-term illness, with the expressed goal of making sense of the social processes that contribute to (re)making their place of sickness. The first-hand experiences of 20 strategically selected interview subjects with systemic lupus (as a subset of people with long-term illnesses) are intensively examined in terms of their inter(personal) relations and transactions with medical and social support services. The conditions that exacerbate their (invisible) disability and confound the disease's reality are considered. The narratives of 50 survey respondents provide supplementary evidence. The theoretical framework is grounded in the commonsense experiences of informants with lupus and emerges from ideas of the representation of sickness, and of body constitution. Socio-ecological models of health, socio-biological constructs of disability, structure-agency theories of remaking place (of sickness) and (theory-mediated) knowledge of (collective life) experience are adopted and adapted. The endeavour culminates in the construction of a situated knowledge of collective life experience, from a seemingly opposed, but enriching, detached-insider position. Through the collective experiences of research subjects in their place of sickness, the thesis makes visible processes that confound the reality of people whose disease is virtually invisible. It contributes to understanding how sickness (a metaphorical place), (inter)personal and meso-structural relations and the macro world (e.g. socially constructed places), as well as sense of self and place in the community (sense of place) interact to reconstruct the place of sickness. First-hand experiences demonstrate that the social reality involved in the construction of (invisible) disability is not an uni-dimensional fact centred on the socio-political domain. Rather, this disabling reality is far more intricate than the political undertone that pervades the catch-phrase: social production of disability. Keywords: Medical geography; People with disabilities; Chronic diseases - social aspects;Body, human-social aspects; Social structure.