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Dancer talks about excruciating pain, isolation and stigma of monkeypox

A colourized transmission electron micrograph of monkeypox particles (yellow) found within an infected cell (blue), is shown in a handout photo captured at the NIAID Integrated Research Facility (IRF) in Fort Detrick, Maryland. (Handout photo by NIAID)

Peter Kelly was still bouncing back from COVID-19 when a case of monkeypox gave him the "worst pain" of his life.

The 28-year-old Toronto resident had only just returned to work as a dancer and physical trainer in late May when he developed a fever.

"I was so delirious," he said in an interview, as he described the agonizing symptoms associated with the disease and the sense of isolation during about three weeks of home quarantine.

"I must have been really sick and I didn't even know. For two days I didn't really move, I would just go to the washroom and go back to bed and sleep some more. It was super high fever and night chills. I was wearing a winter jacket in bed, I was so cold."

Kelly's fever broke on the third day and soon after he said he noticed red rash. He said he immediately began to search the web for what the rash might be.

Dancer tells of excruciating pain, isolation and stigma of #monkeypox infection. #MPXV

"You start Googling this and that's the worst thing you could ever do."

Doctors suspected it was herpes, which Kelly said "freaked" him out.

"That started to really affect my mental health because you can't cure it. You can just control that over the years."

But he looked at the pictures more closely, and wondered if it was monkeypox.

He went to the local hospital and told the authorities: "I need a monkeypox test, please." The result came back positive.

Kelly said he was one of the first people in Ontario to be infected with that virus and is now part of a study among former patients being conducted at St. Michael's Hospital in Toronto.

The Public Health Agency of Canada has recorded more than 600 cases of monkeypox, or MPXV as it is known in the scientific community, since the first report in early June. Quebec has the highest number of cases at over 300, followed by 230 in Ontario, 40 in British Columbia and about a dozen in Alberta. The disease has mostly been reported among men who have sex with men.

There are over 6,000 lab-confirmed cases across the globe and three people have died from the disease, showed data from the World Health Organization. Local transmission of monkeypox has been recorded with no epidemiological links to countries that have previously reported monkeypox, such as western or central parts of Africa, it said.

Kelly said his rash and lesions were some of the most painful things he has had to endure and the simple act of rolling over was "excruciating."

It was when the rash started to turn into boils that the pain became unimaginable, he recalled.

"That is when the pain was throbbing. And I mean throbbing," he said. "It felt like electric shocks. I didn't sleep for probably like 30 hours or something. It was just so painful. I had a washcloth between my teeth trying to clamp on it, just to rock myself through the pain. But I couldn't handle it. It was insane."

One lesion on his left foot began to pool blood because he had to put his weight on it to walk, he said.

Adding to the physical pain was the mental stress, he said.

Apart from visits to hospitals and clinics, Kelly remained isolated in his tiny Toronto apartment.

"I felt helpless because I'm being told to isolate for God only knows how long and I'm in excruciating pain," he said.

During those three weeks, Kelly said he lost all his dancing and training work but his bills kept piling up.

He spent $50 a week at the coin-operated laundry in his building, and $120 on bandages and sterile supplies.

Friends dropped off food and groceries and coins for the laundry. Toronto Public Health gave him a grocery store gift card, although he didn't know how to use it while in isolation.

As one of the first diagnosed cases of monkeypox in Toronto, Kelly said he felt "he was a bit of a guinea pig."

He was told to "triple bag" all his garbage and label it as hazardous waste, to be picked up by a team, he said.

Kelly said he "for sure" contracted the virus at a bathhouse. "I got it because I like to have sex," he said.

While he got a lot of support, he also received some hateful messages on social media.

"'You got the gay pox', or 'you're disgusting', or 'you deserve to get it,'" he said recalling some of the messages.

Kelly said that there was a stigma to contracting monkeypox, and he initially worried how people would react to his infection. But be decided to be open about it.

"I'm going to tell someone about this because there are more people, it's not just me. They're in the same situation at home isolating and there's no one talking about it. There's no resources or anything."

He said he would like the government and public health agencies to devote more resources to fighting the spread of monkeypox.

His isolation period ended on June 21 and Kelly said he found a whole new appreciation for the outdoors.

“I’m getting on with my life.”

This report by The Canadian Press was first published July 22, 2022.

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