Conference presentation
Epidemiology over experience: A narrative comparison of experiences described in senate inquiry public submissions on lyme disease
Australasian Society for Behavioural Health and Medicine (ASBHM 2026) (Auckland, Aotearoa New Zealand, 11/02/2026–13/02/2026)
11/02/2026
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Abstract
Background and aims: Lyme disease (LD) is a tick-borne disease with symptoms ranging from fatigue to brain inflammation. While the Australian government does not recognise it as a locally acquirable disease, many people believe they have had LD for years. Research focuses on determining whether LD is acquirable in Australia, neglecting the experiences of people who believe they have LD.
Method: This study used 12 pairs of submissions from the 2016 and 2025 Senate Inquiries into tick-borne illnesses to examine how changing narratives conveyed contributors’ experiences. Narrative coherence typologies were used to examine the paired submissions. Biographical coherence focused on changes to contributors’ sense of self, and thematic coherence identified similar narrative arcs. Temporal coherence focused on similarities in recounting time and dates of events.
Results: Narrative analysis revealed shifts in submissions across the coherence typology. Three themes were identified in thematic coherence: Perception of an antagonistic force, which included contributors’ beliefs that an outside force sought to suppress LD diagnosis in Australia. Rejection of non-Lyme diagnoses included contributors’ belief that any other diagnosis was incorrect or incomplete, and Legitimising illness to others focused on contributors’ wish for physical symptoms of their illness, or evidence of their illness in the form of test results and studies proving LD’s existence in Australia.
Conclusion: The struggle for diagnosis and the impact of prolonged illness on identity and well-being demonstrate the all-encompassing nature of LD. More support is needed for people living with suspected LD to prevent detrimental health outcomes.
Details
- Title
- Epidemiology over experience: A narrative comparison of experiences described in senate inquiry public submissions on lyme disease
- Creators
- Roshan CaldwellSally Sargeant - Southern Cross University
- Conference
- Australasian Society for Behavioural Health and Medicine (ASBHM 2026) (Auckland, Aotearoa New Zealand, 11/02/2026–13/02/2026)
- Identifiers
- 991013353373102368
- Academic Unit
- Faculty of Health
- Language
- English
- Resource Type
- Conference presentation