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

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.

Prevention of sexual transmission of mpox: a systematic review and qualitative evidence synthesis of approaches

“…After screening, four qualitative interview-based studies were found to have addressed the question: ‘What are the views and experiences of interventions to prevent sexual transmission of mpox among communities at risk of infection?’ Study characteristics for three cross-sectional [ 32–34 ] and one longitudinal [ 35 ] are given in Table 3 . Two European studies collected data in the initial phases of the outbreak [ 33 , 34 ]; one study in Australia was conducted after the initial outbreak [ 35 ]; and one in China was conducted at a time when reported cases were still increasing [ 32 ].…”

“…Three studies [ 32 , 33 , 35 ] only included men (mostly MSM) with experience of mpox. The fourth study [ 34 ] included only MSM.…”

“…All studies included participants’ views on mpox prevention measures, focusing particularly on: behaviour prior to the onset of symptoms [ 33 ], behaviour and practices from the time of symptom onset to recovery [ 32 ], participants’ experiences of treatment and care [ 35 ], and engagement in primary and/or secondary prevention measures [ 34 ].…”

“…Once diagnosed, many participants felt that the predominant focus of clinicians was infection control, rather than care [ 32 , 35 ]. Participants in China found mandatory hospital quarantine excessive in the context of lack of mpox treatment, and that self-isolation at home would have been preferable [ 32 ].…”

“…Three studies [ 32 , 34 , 35 ] described acceptability of different mpox prevention measures, indicating that acceptability of a measure was relative to the participant’s perception of its cost to their wellbeing.…”