“Small Wins” for those with Lyme Disease in Canada: Patients in an Embodied Health Movement

Abstract

Lyme disease patient organizations have formed to challenge a health system that is failing Canadians who suffer from a disease that is ambiguous in its symptomology and trajectory. The framework of an embodied health movement illustrates the importance of the illness experience in mobilizing patients to oppose a system that is reliant on restrictive guidelines that deny testing and treatment and to seek alliances with researchers, physicians, and politicians who are sympathetic to their goals. The strategies of Lyme disease patient organizations, the importance of experiential knowledge, and the roles of both adversaries and allies are examined through a “small wins” approach to gauge successes and setbacks within a Canadian context.

Keywords

• embodied health movement
• chronic Lyme disease
• small wins
• health care
• patient organizations
• illness experience