The Limits of Medicine in Progressive Ataxias

Although it has been identified that medicine may act as both a resource and a constraint in chronic illness, thus far this notion has not been interrogated in any depth. Contingent narrative accounts of people with ataxia are used to highlight the limits of medicine in the context of a rare, untreatable and disabling disorder. These accounts highlight the embodied uncertainties brought by slowly progressive diseases which lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and uncertainties related to the questionable veracity of information about their condition found on the Internet. Whilst people’s accounts suggested the notion of patient as medical consumer, this construction was problematic in the context of an untreatable condition. People were drawn into a medical system that was focused mainly on attempts to diagnose their condition, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of ‘biographical repair’ in chronic illness. Clinical uncertainties in ataxia seemingly constrained people’s attempts to deal with their condition.