Qualitative research found that most Australian gay and bisexual men diagnosed with mpox (previously known as monkeypox) had highly distressing experiences due to severe symptoms, long isolation periods and stigmatising healthcare providers. Dr Anthony Smith from the Centre for Social Research in Health at the University of New South Wales presented the results at the 12th International AIDS Society Conference on HIV Science (IAS 2023) this week.
Following the acute illness, there were also longer-term physical and social effects. While cases of mpox may have declined, this research suggests that people affected by the illness may require ongoing support and trauma-informed care.
The 2022 global mpox outbreak mainly impacted gay and bisexual men. Among a reported 87,942 cases, there were 42 deaths. Australia had 145 mpox cases during the 2022 outbreak, mainly among people returning from travel to Europe and no reported deaths.
Media reports compared the outbreak to the early days of HIV, when gay men’s sexual behaviour was also linked to a stigmatised disease. However, there has been very little qualitative research investigating the lived experience of mpox among gay and bisexual men.
In late 2022, Smith and colleagues interviewed 13 people who had been diagnosed with mpox in either July or August of 2022. Eleven participants had likely acquired mpox outside Australia. Seven received their diagnosis and care in Australia. Follow-up interviews were carried out with eleven participants around six months later. All participants were White gay or bisexual men; one was living with HIV with an undetectable viral load.
Experiences of symptoms
Participants’ descriptions of the severity of their symptoms varied, with some expressing relief that they only had mild symptoms:
“I feel super lucky that I only ever had two blisters and there was nothing else that came of it. They got relatively big, […] but I had it so mild, I feel so fortunate.”
For others, the pain described was extreme:
“It would be the worst pain I have ever experienced in my life. It was extremely unmanageable. I was in tears. I was bleeding. Quite frankly, it felt and looked like my rectum was rotting or ulcerating away.”
Three participants required hospitalisation, while another chose not to go to the hospital due to fear of stigma. Many participants expressed concerns about the visibility of the lesions and scarring on areas such as the face, arms and genitalia.
A few participants reported positive healthcare experiences with non-judgemental and empathic healthcare providers – including clinicians who actively challenged moralistic notions of blame.
“This lady called from [Public Health] and she just said, “How are you?” and I started to cry… She said, “Look, this is not your behaviour. It’s a disease. It could be anyone,” and made me feel a lot better.”
“He honestly was the only one that acted like an actual doctor. He asked questions. He had gloves on, so he wasn’t afraid to touch me. The other ones seemed like they didn’t even want to get within breathing distance.”
However, most of the men reported inadequate pain management, perceived judgement regarding their sexual behaviour and traumatic experiences. One participant had this to say about experiences with contact tracers:
“They were very poor at recording information, and at times I would say they broke privacy. […] They had this overarching ‘I don’t believe what you’ve told me.’ I felt vilified, victimised, felt like I was dirty, like I was not honest.”
Some participants shared harrowing experiences related to rectal examinations and pain management. The stigmatising nature of these experiences were compared to the early days of the AIDS crisis.
“He wanted to do a rectal exam on me… I was really reluctant because I really hadn’t consented, but he convinced me it was going to be fine. It was not fine… I cried. My vision went to like tunnel vision. I was in so much pain. I was really unhappy. It seemed completely unnecessary.”
“They put me in a side room. They catheterised me with no pain relief, which was horrific. […] I got left in the side room for at least 6 hours, I was screaming in pain. I honestly would’ve rather died. It was almost like being an AIDS patient back in the ’80’s. I felt so discriminated against.”
Seven men reported longer-term issues related to mpox. This included ongoing illness such as chronic fatigue or proctitis (inflammation of the lining of the rectum and the anus), concerns about scarring and psychological distress because of severe pain or stigmatising clinical care.
“It’s still giving me trouble in terms of like social anxiety, nightmares, flashbacks. Every time I’m near the hospital, my heart rate goes up and I almost have a panic attack. It’s like little things that I didn’t expect all of this.”
Some men described changes to their sexual practices since mpox, including avoidance of sex.
“I didn’t want them to touch me at all. Like at all. I think it has messed up my mojo a little bit.”
In some cases, this extended to broader social interactions:
“I feel like there’s a portion of my life just cut away… I’d lost all this weight when I came back from overseas, and now it all has gone back on… I’ve been pushing people away that I would normally catch up with, I’ve probably become more of a hermit from it.”
Two men required corrective anal surgery. This participant expressed challenges in both of his interviews, six months apart:
“I’ve just had surgery last week for a perianal abscess which they believe has come from the monkeypox scar tissue. We’re waiting on results for really terrible proctitis…So, the pain and torture and the mindset has not changed. It’s something I’m still having to deal with.”
“It’s been nearly a whole year of not having normal gastrointestinal function. The last 10 days I’ve actually had no pain, no fear, and had control of my bowels. It’s been a very long road.”
Additionally, all participants expressed concerns about contracting mpox again and whether vaccination would be necessary in future.
“There are clear implications to learn from these accounts,” Smith concluded. Healthcare providers should take a trauma-informed care approach given the possibility of health-related distress, offer support around scarring and other ongoing mpox complications, and give clearer advice about any relative post-infection immunity and whether people who have had mpox should get vaccinated.
Given the severity of these accounts and of similar experiences reported in the media, he asked: “How do we ensure that future responses to emerging and re-emerging disease outbreaks are free of stigma?”
Smith, A K J et al. “It was just the most horrible experience of my life” Understanding social and care experiences during and after mpox illness. 12th IAS Conference on HIV Science, Brisbane, abstract OALBD0602, 2023.