Monkeypox on the mind: sex, anxiety and mental wellbeing Photo ©: Mike Jones via pexels.com We just can’t catch a break. We made it through Covid and the seemingly endless lockdowns and here comes monkeypox. Monkeypox has thrown us all for a loop. It can be particularly unpleasant disease that’s easily spread through body contact and is particularly prevalent among men who have sex with men. Although it’s not classed as a sexually transmitted infection, the majority of cases reported in the UK are a result of sexual contact due to up close and personal body contact. Monekypox is here and (due to an ineffective government – more on that later) it’s not going anywhere in the short term. So, what can we do about it? How can we prevent it? And what damage is it doing to our mental wellbeing and us as a community? MONKEYPOX: THE STATS We surveyed 574 people about their monkeypox experiences, how it has impacted their sex lives and their mental wellbeing. Here are some of the main takeaways from the survey: WE ASKED: Have you had monkeypox? Yes – 5% No – 85% Not sure – 10% Have you had the monkeypox vaccine? Yes – 30% No – 70% Has monkeypox made you more anxious about sex? Yes – 69% No – 24% I’m not sure – 7% Have you stopped having sex because of monkeypox? Yes – 39% No – 61% Has monkeypox had a negative impact on your mental wellbeing? Yes – 42% No – 39% I’m not sure – 19% THE VACCINE A vaccine for monkeypox has been made available to those most at risk, which is focused on men who have sex with men and have multiple sexual partners. The vaccine itself is the smallpox (MVA) vaccine which provides a good level of protection against monkeypox. However, how available is the vaccine really? And how many of us have had it? 30% of respondents to our survey told us that they’ve had the monkeypox vaccine. 78% made an appointment, while 14% waited for a walk-in. “During a routine PrEP appointment they said I was not in the high risk group so it would have to wait,” one of our respondents, G, tells us, “but then later that day they called me to say I would be offered vaccine now as someone had clearly realised I did actually fit the high risk category, and I had the vaccine at a booked appointment a week later.” David, 53, says, “We arrived early for a walk-in appointment, so we were in and out in 30 minutes, but when we left the queue was easily 100-200 guys long.” OC explains, “I went to the walk-in at Guys Hospital on Sun 31 July. I got there at 10:50 and I was done by 14:00ish but I didn’t mind having to wait in line so long, it was necessary and the staff did an amazing job.” “It was simple, straightforward and I was given an information sheet to read beforehand. The nurses and clinicians answered my queries and allayed any concerns I had about side effects,” Laks, 47, tell us. J, 50, had less of a straightforward time: “It was really stressful getting an appointment. I scanned a QR code on Twitter, sent my details by email and a few days later received notification that I had an appointment. Fortunately, I could make it. The process at Guy’s was great except that I needed my NHS number - no one had mentioned this previously and I got the impression (I may be wrong) that without it I would not be able to have the vaccine. I found it on my phone. Thinking about it now, I scanned the QR code without even thinking it could be a scam, but such was my level of stress about getting the vaccine, I went ahead. Telephone helplines have been really unhelpful, with a lack of information and a lack of knowledge.” While people are getting vaccinations in their arms slowly, where are we at with current vaccine availability and how many have actually had the vaccine? “Close to 25,000 individuals have so far received one dose of vaccine in the UK,” explains Dr Will Nutland, the co-founder of Prepster and The Love Tank. “There’s currently very little vaccine available in the UK, due to a global shortage. Sexual health clinics have a very limited supply and it’s currently not likely that substantial vaccine will become available until the end of September. UKHSA colleagues are working hard behind-the-scenes to try to access supplies faster. This is frustrating for everyone: NHS staff, epidemiologists, and those of us who want to receive vaccines.” When we asked how they found out about the vaccine an overwhelming 41% said they got their information through friends, with 34% finding out on Twitter. Paul told us: “I only found out about the booking system at Guy’s Hospital through Twitter which was frustrating but quite empowering that gay community is helping each other. It was quite a wait on the day as clinic was running an hour late, but everyone was friendly and professional. Two weeks later my HIV clinic texted me too, so I feel there should be some sort of oversight to feed this information.” 70% of respondents told us that they haven’t been vaccinated, some because they haven’t had the opportunity to have it yet and some through choice. We asked: why haven’t you been vaccinated? I’m waiting for the vaccine to become available - 40% I don’t know how to get the vaccine - 29% I’m not eligible to get the vaccine at the moment - 20% The vaccine isn’t available in my area - 23% I didn’t know there was a vaccine -10% I don’t want the vaccine - 9% I’ve booked my vaccine - 4% “I live remotely,” says FM, 36, “there aren’t many gay men, and I don’t see the need for it . If I lived in London, perhaps I would get it.” Carl, 36, explains: “My wife and I do threesomes with other men. We mostly do safer sex. We are aware of monkeypox as a new risk for us but not of a vaccine.” “There is a shortage of the vaccine so it’s not an option to receive it at the moment unfortunately,” says Robert. “I’ve not been called or texted about the vaccine yet and have not been able to go to any of the drop-in sessions, which are not happening anymore. I don’t know how to get an appointment, but I do fall within the UKHSA/NHS at-risk population and I’m eligible to get the vaccine now,” explains R. Brett, 55, says: “I’m anti-vaccine.” What can we do if someone is unwilling to get the vaccine? “If someone doesn’t want to be vaccinated, that is their choice,” says Dr Will Nutland. “I’m not going to be able to say anything that changes their view. I’ve weighed up the pros and cons of monkeypox vaccination and took the opportunity to receive my first vaccine. That means I feel more confident about my protection, and I feel more in control of my health and wellbeing. For folks who are vaccine ambivalent, I’d recommend seeking information and advice from reliable sources: there’s A LOT of inaccurate information out there.” LIVING WITH MONKEYPOX What is it like to actually have monkeypox? What symptoms did they have and how did it impact them? 5% of our respondents told us they’ve had monkeypox. They told us some of the symptoms they experienced: Fever – 86% Exhaustion – 73% Headache – 64% High temperature – 64% Muscle or joint pain – 64% Lesions on body – 54% Rash – 45% Swollen lymph nodes – 45% Shivering – 45% Pain from lesions – 36% Lesions on genitals – 32% Swollen glands – 27% Lesions on face – 27% Lesions on ass – 27% Lesions inside anus – 23% Bleeding from anus - 14% D, 39, tells us, “I got off easy as my symptoms were mild, didn’t even have lesions, just a rash and flu like symptoms, but everyone I had sex with at a sauna a week before that got sick at the same time as me had it really bad.” “I had three days of low-grade fever and body and eye aches like the flu, and then two blisters developed one on my hand and another in the perianal area, that took about three weeks to heal,” says Miguel, 47. While some people’s symptoms were indistinguishable from the flu, some people presented with lesions and pain. “It was relatively mild but unpleasant,” shares Sam, 33. “It started with fever and night sweats. I had three spots; one on my penis, one on the sole of my foot and one on my chest. I did have to take pain meds prescribed from my GP as the ‘lesion’ on my foot was very, very painful but the other two were completely painless. The lesion on my foot was quite big, looked like a skin cancer growth but was not rough to touch. The other two were very small and pimple like. I felt it took too long to get the appointment to get diagnosed, by the time I did, the course of the disease was almost finished. I work from home and live alone, so I was able to isolate for the most part. I only socialised with one person, outdoors for about three weeks, who was aware of the situation.” George explains: “I had flu-like symptoms at first, lasting four days. During that I had rectal pain like broken glass. I was so swollen I thought I would prolapse when I went to the loo. It was unbelievable pain for four or five days. The day after the flu symptoms went, I developed one lonely pimple on a finger. It was very sore to touch until it scabbed. It was 20 days from first fever to tiny sore being totally healed. The sore lasted 15 days.” “I had a sore arsehole five days after leaving a four-day long weekend in Paris. I took 2x500mg azythromycin and daily doxy thinking it was gonorrhoea. Symptoms got worse on day four or five. I had bleeding and puss from lesions in my arse. I tested day seven and ibuprofen really helped with the swelling and pain. I was fine from day 10 after symptoms appeared. I only had two lesions on my left leg that were really minor - almost like a spot,” says Mintyish, 33. Some people experienced symptoms that were more extreme. David, 55, tell us: “It was horrible. I ended up in hospital due to the huge number of lesions on my penis causing a secondary infection and oedema.” “It was a truly horrific experience,” Tom, 31, shares with us. “I had over 25 painful lesions combined with general flu-like symptoms. I cried in the shower every morning and found it very hard to tell friends and family due to the stigma that is emerging around the virus.” Beyond the physical symptoms, monkepox is having an impact on people’s mental health and wellbeing too. 43% of respondents said that having monkeypox had a negative impact on their mental wellbeing. “It’s more the aftermath of it,” says D, “yet another thing to worry about on top of climate change, war, cost of living crisis, politics, etc. plus harder to hook up now. I have been fine for four weeks but still haven’t had a lot of sex.” Tom, 31, tells us, “the mental impact of dealing with the course of the disease; the isolation of four weeks at home completely alone and terrified and not being able to tell friends and family.” “Not having any lesions on my face meant my work wasn’t impacted at all, and I only having three lesions made it OK. I realise it could have been much worst and could have taken a toll on my mental health,” says Sam, 33. David, 48, explains: “It has stopped me from having a holiday due to self-isolation, which has been endless and with no support. I have also been unable to focus on anything, so it’s pushed out my study timetable by six months. It makes me resent going out for a night of enjoyment.” MONKEYPOX AND OUR MENTAL WELLBEING Monkeypox has seemingly taken its toll on all of us. 42% of respondents who haven’t had monkeypox told us that what’s happening has negatively impacted their mental wellbeing. John says, “I do feel anxious about it and have changed plans or not engaged in sex because of the risk of monkeypox.” Martin, 61, shares: “It’s hard enough being bisexual and married without adding this to the equation.” “I work for a sexual health charity,” explains Eugene, 39, “so the news about monkeypox has been dominating quite a lot. I worry about sexual health services’ ability to cope with all of the additional pressure without any extra support. The strain on healthcare professionals and services worries me.” “It’s frustrating and I am probably more anxious about the prospect of hook-ups, but I don’t feel that’s having a major impact on my mental health. Having said that, I am really angry about how badly vaccination outside London has been handled,” says Gavin, 52. Pedro tells us, “After Covid I was hoping to enjoy sex a bit more and now I am scared about having sex with men from dating apps and even going to gay clubs.” “I feel anxious daily now,” explains Lorenzo. “I find myself examining strangers to see if they have a rash, blisters, or pimples. Any pimple that I get makes me believe that I have monkeypox. It’s caused stress on a new level. I have been counting down the days since my last hook-up to ensure that I don’t show any symptoms within those 21 days.” We asked: what concerns you most about monkeypox? Passing it on to people I care about - 67% Noticeable symptoms on body/face - 65% Passing it on to others – 62% Painful symptoms – 61% Perception of Monkeypox as a “gay disease” – 57% Stigma if you have Monkeypox – 51% Restricting my sex life – 46% Stigma around how you can get Monkeypox - 44% Lack of vaccinations/difficulty getting vaccinated – 42% Makes me fearful of sex – 41% Misinformation about Monkeypox – 31% Monkeypox spreading beyond men who have sex with men – 27% Lack of information about Monkeypox – 26% Getting vaccinated - 7% Ian Howley, Chief Executive of LGBT HERO said, “It was very clear once we understood this to be a virus being passed through sexual activity this would have an impact on our community. Men who have sex with men make up a small part of the population. We’re not a lot of people but we tend to collect ourselves in tight-knit circles, so once this became a virus that passed through close contact and sexual activity it was bound to impact us. What we were not ready for, was the impact it would have on our community’s mental wellbeing. It’s understandable people will feel anxious about this virus. Monkeypox, even though it doesn’t seem to be lethal for the vast majority of people who get it, is a very visual virus that can be quite painful for many. The fear of contracting the virus and the impact it will have on our bodies is quite high. It’s not right that a community like ours has to deal with this without much support. Ian continues, “But it’s clear that the thing most people are worried about is passing it on to others. This breaks down the stigma that we are a selfish community. It’s obvious that we care about others and do not want to pass on this virus. This gives us hope that if we all work together, we can beat this virus.” MONKEYPOX AND OUR SEX LIVES Monkeypox is having a serious impact on our sex lives. 69% of respondents told us that they are more anxious about having sex and 39% have stopped having sex altogether. Stanley, 31, says, “I don’t want to get infected and it’s not clear how bad it could be. It seems so random, like a Russian roulette.” “It has just brought the general concerns around STIs to front of mind,” explains G, “and given it is a very visible infection, plus the isolation, if you catch it, it would mean people at work would know I was having sex with multiple people. I am out as gay at work, and have a longer-term partner, but it is not common knowledge that we have open relationship.” Laks, 47, tell us: “After abstaining from sex for so long due to Covid, it was great to start having sex again. Now I’m concerned about intimacy as I don’t want to be sick and have to isolate.” “I’m afraid after hearing the stories of pain that people experience. I have stopped myself from hooking up or going out to large gatherings. My anxiety levels have spiked and I find myself having a panic attack during the week, when I get a pimple,” says Lorenzo. “Each of us needs to balance up the potential risks of being exposed to monkeypox verses the joy, pleasure and connection we get from sex,” says Dr Will Nutland of Prepster and The Love Tank. “I did a Twitter thread in May that gave my personal response to questions peers had asked me about “what would you do?”. In that thread I acknowledged that cutting down on sex might be easier for some of us than others. As communities, there are a few things we could do: taking a break if we have any of the symptoms of MPX until we’ve sought medical advice and know we’re well; being on the lookout for symptoms and taking a break if we notice any; talking to our partners and - if it’s possible and safe to do so - asking to be contacted if they notice symptoms.” We asked: what’s specifically causing anxiety around monkeypox? I’m worried about getting monkeypox – 77% It’s another thing to have to consider before you have sex - 59% I’m worried about the stigma around how you get monkeypox – 48% Hooking up is more stressful - 45% I’m worried about passing Monkeypox on - 44% I’m worried about being judged - 40% I haven’t been vaccinated - 40% Sex doesn’t seem safe – 36% I can’t fully enjoy the type of sex I love - 31% I’m feeling overwhelmed by the monkeypox news, particularly after Covid - 30% High up on people’s concerns was anxiety around hooking up and sex, as well as judgment for having monkeypox. For the 39% of people who told us they have stopped having sex because of monkeypox, we asked them what brought them to that decision. Aleksandr, 32, explains, “I’m not out to my family and I’m scared if I were to contract it, I would be outed. Knowing what my family feel about gay people they would use the classic ‘this is god punishing you for you sin’.” “I want my vaccine to kick in and then I can think about options. Right now, no sex seems worth it. But I hate the homophobic Puritanism of it, and I feel I am capitulating to their values,” says an anonymous respondent. OC has a similar sentiment, “I stopped until I was vaccinated. I am now waiting the 14 days for the vax to effective before venturing out on the scene again. I will just need to get over any residual anxiety.” “Don’t want to catch it. Don’t want that have to take time off my new job due to it. Don’t trust guys not to check themselves and be honest of their partners or guys they play with,” explains Richard. Ian Howley from LGBT HERO says, “Everyone deserves the right to have a happy and healthy sex life. Sex is a big part of who we are as people. This virus is impacting how people are having sex, including limiting or even stopping having sex. No other community in society would be expected to do this for as long as we are expected to. Even organisations who claim to be on our side played into the stigma and shame inflicted on our community when they asked for gay venues to be shut down. This is not acceptable. “Our advice at LGBT HERO is that if you are someone who can stop sex for a while and it won’t impact your mental health or cause severe anxiety then do so until you can get vaccinated. If you are someone who would struggle to stop sexual activity, then the best thing you can do it try and change some of your habits and be on the lookout for symptoms in yourself. “The vaccine has proven to work in preventing the spread of monkeypox, but it does take about a month for the vaccine to get to its full potential. Once you hit that point, you’re doing all that you can. Get your life back together and don’t let anyone shame you for having the sex you enjoy.” MONKEYPOX STIGMA Of the respondents who told us they’ve had monkeypox, 39% reported that they have experienced some kind of stigma because of it. We asked: where did you experience the stigma? Mainstream media - 24% Other people in the LGBTQ+ community – 19% Family - 14% Social media - 14% Friends -9% Work colleagues – 9% Dating/sex apps – 9% Heterosexual people – 9% Partner(s) - 5% Brad, 42, articulates his feelings about monkeypox stigma: “It’s a very unpleasant illness to have potentially, painful, and visually upsetting. It also requires isolation, and there is some stigma around it.” “If I had to self-isolate for three weeks it would have a major impact on my job, and if I lost my job it would have an enormous impact on my life,” Bob explains, outlining the very real impact of telling people you have monkeypox. James, 45, very succinctly puts it: “It has added to my feelings of gay shame.” I an Howley of LGBT HERO said, “I have been appalled at how some in the mainstream media have handled this virus. First of all, they were talking non-stop about the virus, then once the news came out that it was mainly affecting gay men they reported it that way and then stopped really talking about it. What sort of message does that send out to everyone? – this is a gay disease, and the rest of society doesn’t have to worry. The other thing they weren’t saying out loud is how OK they were that gay men were the only ones getting this. This is not OK. Our media has learned nothing from the past. “Labelling this as a gay disease will first stigmatise gay men. We have already had reports of gay men being called ‘monkeypox faggot’ in the streets. And second the general population won’t take this seriously or even miss diagnose themselves if they do contract the virus – making it easier that this becomes an endemic in our community. “I’m also not happy that other people in the community are stigmatising people for having this virus. Going through the AIDS crisis should be enough for people to understand that we need to treat each other with compassion and care. Please do not stigmatise people for having this virus – or the sex they are having. Stigma of any kinds hurts us all not just the person who you are aiming it at.” COMMUNITY STRENGTH It’s been a difficult time for our community, particularly in a ‘post-Covid’ and post lockdown landscape, where we should be able to start enjoying our lives, including our sex lives, fully again. Monkeypox has thrown a considerable spanner in the works. However, our community has a history of enduring and this has been particularly highlighted in the response to monkeypox. Where the government has failed us, we have mobilised, shared information, helped each other and fought together to overcome monkeypox. “It’s times like this when we see how brilliant our communities are!” exclaims Dr Will Nutland. “Community organisations and organisers are stepping up to produce evidence, create information, and undertake outreach. We’re seeing some very thoughtful activism - and that activism is often creative, constructive and collaborative. “I’ve done my fair share of yelling at the system - but there’s no point expending that energy if the system is so broken. Our politicians created the system - including the 2012 reforms of public health - and monkeypox is shining a light on how broken that system is. We need to hold those politicians - and the global structures that allow our current global health system to continue - to account. There’s been a lot of yelling at the wrong people or structures. “But I also want to salute the activists - not just queer men - working in the NHS and in our statutory organisations, who are doing so much inside the systems. This isn’t a binary between “community” and “official” response. There’s community within those official systems.” WHAT CAN WE DO ABOUT MONKEYPOX? How do we eradicate monkeypox and the feelings of anxiety and fear around sex that it has created? “We need current vaccine supply to be targeted at those who are most likely - right now - to be exposed to monkeypox,” explains Dr Will Nutland. “That means clear and data driven health promotion information and interventions that reach those who most need vaccination. Then we need up-coming future vaccine supply to also reach that group, and to target the networks directly close to those people. “There’s a clear argument being made that to mitigate future outbreaks we need a global response. If we only vaccinated those in the current most immediate networks, even if we massively reduced transmission within the UK, there will be other unvaccinated people, who have sex outside of the UK where monkeypox prevalence is higher, and/or people from those areas who travel into the UK and have sex with unvaccinated people based in the UK. If we’re to move towards elimination, we need to consider the role of an ongoing monkeypox vaccination programme, for those groups most likely to be involved in exposure.” And what do we do to heal the emotional wounds of monkeypox and its toll on the LGBTQ+ community’s wellbeing? Finally, we asked Ian Howley of LGBT HERO on what we can do. He said, “Although this virus is impacting our community now, if we all work together, get vaccinated when we can and look out for each other will can be the community that ends monkeypox in the UK. In the meantime, if you do contract the virus, please look after yourself, your mental health and try not to worry too much. It may be an uncomfortable time, but you’ll get through it. We’ll all get through it. Let’s show everyone just how strong and caring our community really is. Monkeypox may not have started with us, but we can be the ones who end it.” MONKEYPOX AT A GLANCE Here are some key things to remember about monkeypox while we navigate this difficult period: TRANSMISSION: The current outbreak is mostly transmitted through the blisters/rash of an infected person. However, there’s still a lot we don’t know, such as if it can be spread through semen or how often it’s transmitted through droplets in the air. STAYING SAFE: Sex shouldn’t be scary. Be aware of the symptoms, keep up to date with information and make informed choices. There’s no right answer in this situation. While caution is advised, it’s not right to stigmatise or point fingers at those who make different choices. Staying safe still involves regular testing, isolating if infected and looking after your sexual health. VACCINATION: Vaccine stock is limited in the UK and some areas have already run out. Different ways of getting the vaccine to the most vulnerable are being discussed. We advise you check in with a trusted sexual health service or organisation via social media to get the most up to date information. The system for securing a vaccine has varied. Some clinics are contacting patients when they are eligible, others are offering online booking and some are asking patients to email a vaccination request. Don’t worry. More doses are on the way and vaccine availability should increase as we move into the autumn. SUPPORT EACHOTHER: The best thing we can do during this time is to support each other as a community. If you hear some information (from an official source - let’s not spread rumours) tell you friends. If you see a post on social media from an organisation or clinic, retweet and share it. Finally, don’t stigmatise others if they have monkeypox. Support them, help them and have some understanding. It can be a difficult and sometimes painful disease and they need the support of their community just like we all do. Visit LGBT HERO's monkeypox hub for the latest information, help and advice. Find out more about sexual wellbeing by visiting LGBT HERO’s sexual wellbeing hub.