‘I felt like I was dirty’: experiences of gay men diagnosed with mpox in England

“After I left the clinic, I got very emotional. Not because I had monkeypox…But I felt let down by the way the discourse, and the way that the infection, the virus or whatever it is, was being portrayed as well. It took me to a place where I just didn’t expect to feel in terms of my experience, as a gay man, with lots of privilege in lots of ways. Usually I felt like I had dignity in the [health] service and the way I am treated by the government and the likes of that. And it just kind of really sped away suddenly.”

A recent study found that men diagnosed with mpox, clinicians and community stakeholders believe that the government's perceived inaction towards the illness was due to its association with stigmatised sexual minorities. This systemic failure was often compared to the initial response to the AIDS crisis.

During the 2022 outbreak, HIV-negative gay and bisexual men who had little experience with stigmatising illnesses found their mpox diagnosis to be particularly traumatic and a personally threatening experience. They often required additional support beyond what was available. However, men living with HIV seemed to handle the stigma better, drawing on resilience from past experiences with HIV.

Mpox was associated with significant feelings of stigma, particularly due to homophobic narratives that linked promiscuity with illness and disease. Some men were also discriminated against by sexual contacts, online, and in healthcare settings. All men who had contact with non-specialist hospital services (such as Accident and Emergency) after receiving an mpox diagnosis reported some degree of enacted stigma from staff, usually related to infection control measures.

“They told reception that security had to protect, to cover me and not let me move. I had to sit on one seat outside in the open with two security standing around me. I looked like a patient under mental health 136 [section] mate, that’s what it looked like.”

The researchers recommend involving affected communities planning and delivering care in future outbreaks.

Background

In May 2022, a global outbreak of monkeypox spread rapidly among the sexual networks of gay and bisexual men. This outbreak was first identified in the UK, Portugal and Spain, later spread across Europe and the Americas, and remains an issue in several countries in the global south.

With the exception of an Australian study, there has been limited qualitative research on the patient experience of mpox. To better understand the social and clinical support needs of people with mpox, researchers from University College London conducted interviews with 22 gay and bisexual men who were diagnosed with monkeypox in England in 2022. The researchers who conducted the interviews were also cisgender gay men.

The majority of participants (82%) were gay, cisgender (96%), and 27% were HIV-positive. Half (50%) were HIV-negative but on PrEP. The researchers also interviewed four stakeholders involved in the response, two clinicians and two from community organisations.

Emotional reactions

Men often compared mpox to HIV and other sexually transmitted infections. Due to the limited availability of treatment and the self-isolation requirements, mpox was seen as more severe than chlamydia and gonnorhoea. However, since it is self-limiting and typically not life-threatening, it was considered to be less severe than HIV.

“In terms of the process and the feelings of actually finding out, it felt more similar to when I was diagnosed with HIV, in that there was that kind of denial. And obviously the consequences are different because the consequence of this was isolation for three weeks. Whereas the consequences of catching HIV that, you have to live with it for the rest of your life.”

The primary concern for many was how the illness would progress, if they would be left with scarring and what complications might arise. A lack of information about the course of mpox illness compounded this.

“There was a lot of doom scrolling definitely, trying to look up online everything about this illness, because there wasn’t a lot of information out there, about what happens next, what’s going on? Is it going to spread? Are they going to be elsewhere?”

Stigma was prominent and mpox was often associated with homophobic narratives such as promiscuity and disease. These narratives were reinforced by sensationalised media representations and information disseminated by health organisations. Many individuals, particularly younger HIV-negative gay and bisexual men, experienced significant levels of felt (internalised) stigma.

“It felt like I was- the best way to describe is probably dirty. I felt actually really not self-conscious because I knew that nobody else would see them [mpox lesions] other than obviously the doctors and nurses. But I felt like I was judging myself basically for having them. I can remember sitting at home and I was just crying because I was like what do I do about these?”

Enacted stigma occurred within the health service, from sexual contacts, on social media, and through inappropriate disclosure by employers. Many were subtle or one-off comments, while others were more serious. One man who shared their diagnosis on social media experienced intense trolling:

“I was receiving a lot of homophobic abuse. Not just from straight people, but I was getting it from the LGBT community as well. So they were calling me disgusting, had I learnt nothing from COVID? Likening monkeypox to the AIDS crisis and all that kind of stuff.”

Experiences of healthcare

Most men with moderate or severe illness were diagnosed promptly due to the distinctive nature and severity of their symptoms. A minority who sought testing, particularly those with mild illness, described issues with misdiagnoses and diagnostic delays, especially earlier in the outbreak when healthcare staff were less familiar with mpox symptoms.

“And I think it was around this time, because I had this spot here, my friend had had monkeypox, and I’m gay. And so, I just started thinking, ‘Oh, could it be monkeypox?’ And so, I think I may have suggested this to one of the surgeons, who I think kind of dismissed it and didn’t really think much about it.”

During testing and diagnosis, healthcare providers usually provided men with sensitive information that met their needs and helped reduce stigma.

“I did talk to them about the shame stigma element of it. I was like ‘Have you found that it is being more talked about as a gay and bisexual disease?’ and they said yes they had. But they also did say, ‘we know that’s not a true reflection.’ So they were really good in that sense where they did say, ‘it’s out there, it’s what the media is reporting but it’s just an infection that anyone can have.’”

But later on, accessing trusted information was often challenging for men with mild illness. While some of them searched for information online, others tried to get back in touch with clinical or contact-tracing services. However, contact tracing was perceived as inaccessible and challenging, with some men having multiple unsuccessful attempts to get the information they needed.

One man who was being cared for by a remote clinical service for those with moderate mpox (not requiring in-patient treatment) described how healthcare staff threatened to report him to the police for ending six-weeks of self-isolation before they judged him fit to do so. This was despite him self-assessing that he met the criteria as all his scabs had fallen off with fresh skin underneath.

“Yes, it did get to the point where I said to the hospital at the end of the isolation, I refused point blank to speak to them because they were saying, ‘We're going to contact the local police.’ And I was like, ‘Well, do what you need to do, I'm refusing to speak to you, please transfer my care back to the clinic.’”

Many men reported receiving inconsistent and unclear information about both self-isolation (how long it should last) and vaccination (whether it was available to people who’d had mpox infection).

For many men, adequate symptom control was central to good clinical care as pain was a persistent issue. Most men with mild/moderate mpox who needed it were provided with some form of pain management. However, some were denied any medication beyond paracetamol and ibuprofen, which could lead to feelings of not being trusted by doctors.

“My friend went to a clinic in London and because they had cases before, they gave him medications and whatnot. My clinic didn’t give me any medication. They were like just isolate and you should get better. So I know we shouldn’t do it but […] he shared his medications with me. He was already getting better […] and I didn’t have any.”

A man with a critical case of mpox illness felt that the care he received was inadequate and did not take the severity of his condition into account. He was briefly hospitalised, then discharged, readmitted for some time, and discharged again. Later, he was readmitted again with critical illness and required surgery to remove dead tissue from his wounds, which caused life-changing disability. He remained in the hospital for several months.

“I felt their [early admission] focus was, I might be able to eat. They need to make sure, for me to be discharged […] that I was able to feed myself and that was their main focus. Nothing was ever really said about monkeypox, nothing was ever said. Potentially, if I had been identified, I [would not have had this outcome].”

Regardless of mpox severity, men with pre-existing mental health concerns described a deterioration in well-being, often substantial, linked with mpox.

“I suffer from major depressive disorder as it is anyway, so I think that combined with that illness that does affect your mental health, it just made it a thousand times worse. It impacted me, rather than it being up, down, up down, it was just a long-term stream of depression […] I think there was obviously some long-terms impacts of it on the brain.” Transgender White bisexual man, aged 18–25, mild illness.

The ability to engage with healthcare providers without stigma was very important for men diagnosed with mpox. For this reason, many preferred to seek care at sexual health clinics, which were felt to have the cultural skills necessary to support gay and bisexual men without worsening stigma. Contact tracing staff were sometimes felt to lack cultural competency.

“It felt very kind of, almost like an interrogation, which makes you feel like you’ve done something wrong, and I was like, I’ve only been on holiday.”

In contrast, some men described that larger hospitals with specialist infectious disease units were better equipped to deal with patients experiencing moderate and severe mpox illness. This was attributed by stakeholders to having staff experienced in managing infectious diseases.

Conclusion

The lack of cultural competence in some health services that catered to gay and bisexual men resulted in stigmatisation and, at times, distress. This highlights the importance of involving members of affected communities in co-producing, planning and delivering care – including contact tracing, where stigma is likely to be a significant barrier to engagement.

“This should be done continuously from the outset of outbreaks and be accompanied by appropriate funding, especially for community-based organisations who often face financial precarity,” the authors conclude.