Monkeypox: Gay man recalls ‘total nightmare’ of contracting ‘agonising’ virus at Pride

Gay man recalls 'total nightmare' of contracting 'agonising' monkeypox at Pride

A New Yorker has described his “total nightmare” with “agonising” monkeypox after contracting the virus at Pride.

Describing his experience in The Guardian, Sebastian Köhn not only explained his painful ordeal, but told of barriers to treatment and his concern that monkeypox is “going to be another endemic disease”.

Köhn, a Swedish philanthropy worker living in Brooklyn, explained that he contracted the virus after sleeping with several men over the New York Pride celebrations in June, believing that the city’s cases were “relatively small” at the time.

“I had a high fever with chills and muscle aches, and my lymph nodes were so swollen they were protruding two inches out of my throat,” the 39-year-old explained.

“First, I took a COVID self-test: negative. Then I started suspecting monkeypox. I texted a friend: ‘I’m just sitting here waiting for the rash to start.'”
He wrote that the city’s testing capacity for monkeypox was “absolutely dismal”, and he was not able to access the testing or care he needed quickly.

He added: “For the past decade, my work has primarily focused on sexual and reproductive health and rights, so I followed the outbreak from the very beginning.

“I had even tried to get vaccinated when New York City launched an initial vaccination drive on 23 June. But like the vast majority of other New Yorkers who tried to get an appointment, I had no luck.”

People queue to receive the monkeypox vaccine in Brooklyn, New York

People queue to receive the monkeypox vaccine in Brooklyn, New York (Kena Betancur/AFP via Getty Images)

Köhn added that he developed “lesions literally everywhere” – which he described as initially “looking like mosquito bites” before developing into “pimply blisters” that eventually scabbed over – and “intense pain”, but he wasn’t given any further information from healthcare workers when he tested positive for monkeypox, or access to antiviral medication.

He added that lesions on his rectum turned into “open wounds” that would make him “scream out loud” when going to the bathroom.

“I was clearly very sick, yet had to cobble together a care plan on my own,” he said.

He eventually received a call from a clinic who invited him for experimental treatment.

“Because the drug hasn’t been extensively tested in humans, there’s quite a significant informed consent and intake process,” he said. 

Köhn added that he is “still in isolation” after taking medication and recovering, and that his ordeal “feels like a huge failure that should not have been allowed to happen”.

“If someone like me, who has worked in sexual health for a long time, had such a hard time navigating care, I can’t imagine other people doing it,” he said.
 “I know several people who are just sitting at home in agonising pain because they’re not getting the support that they need.”

“I’m pretty worried that we’re close to the point that this is going to be another endemic disease, especially among gay men, if we haven’t passed that point already.”

On Saturday (23 July), the World Health Organization (WHO) declared the growing monkeypox outbreak a global health emergency after a surge in cases worldwide.

There have been 16,015 monkeypox cases globally with 4,132 cases reported in the past week, according to WHO data. So far, there have been five deaths linked to the virus. 

While monkeypox is primarily being detected among gay and bi men, and other men who have sex with men, anybody can acquire the virus.

Those who are currently being offered the vaccine in the UK include healthcare workers and clinicians offering the vaccine, and men who have sex with men who have multiple partners, and those who have already been in contact with an infected person, the UK Health Security Agency (UKHSA) said.

Steve Russell, NHS director of vaccinations, said in a statement: “The NHS is now scaling up its plans to get people vaccinated, particularly in London, thanks to the efforts of staff who are working hard to help stop onward spread, in line with UKHSA advice.

“Thousands more people will be invited very shortly with the number of clinics expanded too, and as we have done with the most successful COVID vaccination programme in history, the NHS will leave no stone unturned in ensuring everyone who is eligible can get protected.

“We are asking people to wait to be contacted and to come forward at the earliest opportunity possible when invited to get vaccinated.”

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