Living with Lupus in Ottawa, Ontario: An Exploration of Illness Narratives

Lupus, a chronic illness that is characterized by a series of unpredictable flare-ups, is known to affect different sufferers to varying degrees. This thesis explores the barriers and limitations that are suffered by these individuals both in the public sphere and in some private aspects of life, as well as beginning to question the limitations of Canada’s ‘universal’ health care system for the treatment and support of chronic illness sufferers. After a brief overview of illness narratives, the social aspects of the illness experience are explored. Secondly, I examine the more structural aspects of this experience by looking at the barriers to care and other support services which those with lupus endure. This thesis demonstrates that in general, lupus sufferers experience varying degrees of delegitimization of their illness experience, sometimes resulting in a delay in care or inaccessibility of necessary services.