Post-diagnostic lived experiences of individuals with essential tremor

Abstract

Purpose: This research study aimed to explore the lived experience of individuals with essential tremor.

Method: This study was qualitative in nature and informed by interpretative phenomenological analysis methodology. Semi-structured interviews were conducted with a relatively homogenous sample of nine individuals with a diagnosis of essential tremor.

Results: Three major themes were constructed: “But they often look at you like you’re some drug addict or smackhead”: Social attitudes to difference; “I just couldn’t do it anymore”: The restrictive nature of essential tremor; and “You’ve got to cope; you’ve got to learn to fight different ways”: Rescuing some normality amid physical deterioration.

Conclusion: This study offers much needed experiential understanding and interpretation of one of the most prevalent neurological conditions with regard to the emotions associated with specific day-to-day experiences, the restrictions placed upon everyday practicalities and the coping strategies employed. This study has highlighted the need for health care professionals to provide individuals with information regarding psychological support, and a need for more public awareness campaigns centred around essential tremor.

Implications for rehabilitation

• Judgements of others and being unable to conform to social norms results in social embarrassment and anxiety for people with essential tremor.

• Public awareness campaigns could help reduce the stigma experienced by people with essential tremor.

• The emotional response to the physical limitations of essential tremor can also be complex and particular to the individual and signposting to psychological support may be helpful.

Keywords:

• Essential tremor
• experiences
• IPA

Acknowledgements

The authors wish to thank all participants who gave their time, patience, and shared their personal stories, throughout this research process. We also thank Mary Ramsay, our expert by experience, for her input with the interview schedule.

We thank Sarah Heard for her editorial assistance.

Disclosure statement

No potential conflict of interest was reported by the authors.