Mpox Illness Narratives: Stigmatising Care and Recovery During and After an Emergency Outbreak

Author:

Smith Anthony K. J.12ORCID,Storer Daniel34,Lancaster Kari15,Haire Bridget234,Newman Christy E.12,Paparini Sara6,MacGibbon James12,Cornelisse Vincent J.47ORCID,Broady Timothy R.1,Lockwood Timmy7,McNulty Anna38,Delpech Valerie9,Holt Martin1

Affiliation:

1. Centre for Social Research in Health, UNSW Sydney, Sydney, NSW, Australia

2. Australian Human Rights Institute, UNSW Sydney, Sydney, NSW, Australia

3. School of Population Health, UNSW Sydney, Sydney, NSW, Australia

4. Kirby Institute, UNSW Sydney, Sydney, NSW, Australia

5. Goldsmiths University of London, London, UK

6. SHARE Collaborative, Wolfson Institute of Population Health, Queen Mary University of London, London, UK

7. NSW Health, Sydney, NSW, Australia

8. Sydney Sexual Health Centre, Sydney, NSW, Australia

9. North Coast Population and Public Health Directorate, Port Macquarie, NSW, Australia

Abstract

In May 2022, a global outbreak of mpox (formerly monkeypox virus) affected thousands of mainly gay and bisexual men. Mpox is usually a time-limited illness that can involve fever, pain, and skin lesions, but may require hospitalisation. There is scant research into the firsthand experiences of people affected by mpox, including experiences of symptoms, healthcare, and recovery. This study considers the different illness narratives of people who experienced mpox in Australia in 2022. In-depth interviews and 6-month follow-up interviews were conducted with 16 people, including 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay or bisexual men living in Australia. Participants’ accounts described minor to severe periods of sickness, negative and stigmatising experiences engaging with healthcare, and some participants experienced long-term effects on their sexual well-being and complications from mpox. The emergency outbreak context meant that mpox was highly distressing, making it difficult to manage and producing varying forms of disruption to everyday life. Mpox was narrated as disruptive in different ways: as a minor interruption to holiday plans, a prolonged period of poor health, or a biographically disruptive event prompting a re-evaluation of sexual values and health. This analysis demonstrates that an unfamiliar emergent disease outbreak related to sexual practices and sociality can reconfigure personal life and sexual well-being, suggesting a need to focus on providing quality patient care in outbreaks of mpox and other infectious diseases.

Funder

Triple I Clinical Academic Group 2022 Seed Grant Funding

Australian Research Council DECRA Fellowship

Publisher

SAGE Publications

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