Experiences of living with dystonia

Morgan, Andrew and Eccles, Fiona and Greasley, Pete (2021) Experiences of living with dystonia. Disability and Rehabilitation, 43 (7). pp. 944-952. ISSN 0963-8288

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Abstract

Purpose: Dystonia is a chronic and incurable movement disorder. This qualitative study aimed to enhance understanding of the condition by exploring the experience of living with dystonia. Method: Interpretative phenomenological analysis was used to analyse data gathered through semi-structured interviews. Eight participants were recruited via a UK based dystonia charity. Results: Three superordinate themes emerged from the data: (1) Dealing with ignorance and uncertainty: navigating health services with a rare, poorly understood condition; (2) The challenge of social isolation: overcoming barriers to positive social identity; and (3) Fear of psychological explanations: the impact of stigmatised attitudes towards psychological explanations for dystonia symptoms. Conclusion: Coping with a rare and chronic condition led to participants feeling isolated and stigmatised by health care services and their communities. Participants were able to overcome this challenge to their identities through the use of social support, particularly from other people with dystonia. Recommendations for reducing the stigmatising experiences of people with dystonia can help to ease the process of adjustment to the illness and enable people to pursue meaningful lives and positive identities. Recommendations for research are aimed at increasing knowledge about these processes.