In summer 2022, at the peak of the mpox (monkeypox) outbreak in Europe, Harun Tulunay and Martin Joseph, both from London, United Kingdom (UK), experienced the painful and scary symptoms of mpox at a time when health information and advice was hard to come by. One year on, we asked them to look back, and share their reflections.
An uncertain time
Both Harun and Martin struggled to get answers when they got mpox, and the resulting confusion left them feeling anxious.
“When I first got mpox, I felt shame. Even before I was worried about my health, I was worried about how I was going to tell people,” says Martin.
Rather than hiding away, both, in different ways, decided to share their stories for the benefit of others.
The images Harun Tulunay shared of the mpox lesions on his face and hand were some of the first published in the media and social media. They helped to alert affected communities in Europe – mostly gay, bisexual and men who have sex with men (GBMSM) – as to what to look out for, and his honest testimony started a conversation about sexual health that he is still continuing. Since getting mpox, Harun has become a busy sexual health activist and advocate who is developing and delivering trainings, to encourage people to share their experiences and to fight stigma. Helping people access reliable sources of information on mpox and other sexually transmitted infections is important to Harun, since he has witnessed the devastating effects of misinformation.
“Stigma is the biggest problem we face and that will only go away when we start to talk about those things with other people. Thanks to the experience [of getting mpox], now I am not afraid to share with people my lived experiences and to show them the right resources and how to action them.”
Martin Joseph’s reaction to his traumatic experience of mpox was to create 10 episodes of a podcast series called “What the pox?”, a deep dive into the social, political and medical aspects of mpox. Episode 10 features interviews with a range of experts, including Dr Richard Pebody, who heads the mpox response for WHO/Europe. This innovative communication forms the basis for 1 of 12 case studies in a new compendium produced by WHO/Europe that shows how affected communities have been, and remain, at the heart of the mpox response.
One year on, what has changed?
One of the biggest changes both men report since the mpox outbreak is more openness in the UK’s GBMSM community about discussing sexual health. Indeed, they credit the sharp decline in case numbers in the wider European Region in part to the tricky conversations the community has broached about mpox, including one-to-one communications about sex.
“People changed their behaviours, people got vaccinated, people started talking about their sexual health. People isolated themselves when they did have mpox,” explains Martin. “People have been really, really cautious and have actioned advice and supported each other. They spoke on social media and said ‘This is where you can get a vaccine’. Everyone worked together to get us to this point where mpox is not at a terrifying level.”
He too now communicates more freely: “The biggest thing I’ve changed is that I have really open conversations all the time with people, even just friends, about sex and sexual health, and I’ve created a space where I’ve had a lot of friends that have called me and said, ‘Hey, I’ve got a question’.”
Summer and beyond
Despite these encouraging signs, Martin sounds a note of caution that mpox could still resurge during a summer of events and parties.
“I’m concerned that it could come back, you know, the sequel, but I’m hopeful we’ve learned a lot and we have shown that we can come together as a community and really protect ourselves. The best thing you can do is go out into the world and make sure that when you are going to these festivals or have sexual partners you’re being as responsible as you can, so that you can ensure that you are taking care of everyone you’re coming into contact with.”
This responsibility includes regular health self-checks and talking to sexual partners about symptoms, if possible. For those recovering from mpox, it means taking a break from sexual activity until the last scab has fallen off. Mpox vaccination, if available, offers an extra layer of protection, but it is important to protect yourself, even after vaccination. Anyone who thinks they might have mpox symptoms should self-isolate as much as possible and get in contact with a trusted sexual health service provider or local sexual health clinic.
Martin adds: “Whilst it is important for individuals to continue to remain vigilant, without coordinated global action from governments and health authorities, mpox will continue to be a problem.”
Harun’s experience of mpox, coupled with his experience of living with HIV, has made him an even greater advocate for health equity and ending global inequalities in vaccine availability. He is now healthy and happy and looking forward to a summer season of events, which he also plans to enjoy responsibly.
“As long as you protect yourself and be the best advocate for your own health, you can enjoy life. Nothing can stop you. I would like to say to the gay, bisexual and MSM community ‘Keep on doing what we have been doing – just protecting each other, just sharing the right information and helping each other to access vaccination and thinking of each other’.”
Mpox guidance and information from WHO/Europe
To help health authorities and community members tackle and eventually eliminate mpox, WHO/Europe is launching 4 new products and initiatives:
- a new compendium of case studies entitled “Eliminating mpox in the European Region – a response with communities at its heart”;
- an mpox policy brief – “Considerations for the control and elimination of mpox in the WHO European Region: the need for integrated national operational plans”;
- a campaign called “Eliminating mpox. Placing affected populations at the heart of our response”, which accompanies the policy brief;
- a Risk Communication, Community Engagement and Infodemic Management (RCCE-IM) Toolkit for Mpox Elimination.