Experiences of living with dystonia

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.

IMPLICATIONS FOR REHABILITATION

• Dystonia has a pervasive, negative impact on the lives of people with the condition.

• The struggle for diagnosis marks the beginning of a period of psychological adjustment, the difficulty of which is compounded by social isolation and stigma.

• Support groups and peer interaction help people to integrate dystonia into their concept of a meaningful life and identity.

• Health professionals should play a pivotal role in assisting patients during the process of adjustment and on-going self-management through sensitive communication and signposting to wider support services.

Keywords:

• Dystonia
• identity
• interpretative phenomenological analysis
• rare diseases
• social isolation

Acknowledgements

The authors would like to thank the Dystonia Society and all of the participants.

Disclosure statement

The authors report no conflicts of interest.

Notes

1 (…) indicates removed text.

2 [text in square brackets] indicates additional information.