Catching monkeypox can mean extreme pain, hospital trips — and weeks of isolation

In late May, not long after he'd gotten through a mild bout of COVID-19, Peter Kelly spiked a sudden fever. He quickly realized it wasn't the tail end of a COVID infection.

Over a period of several days, the Toronto resident became exhausted, and his muscles began to ache. His temperature oscillated between chills and night sweats. Then, strange sores started to appear on different parts of his body — eventually around two dozen that he could see, mostly on his legs, and painful ones hidden from view in his rectum. 

As a professional dancer, Kelly is used to pain. He's been injured a lot — most recently, a broken rib that's still healing — and has serious eczema, a skin condition that can cause an itchy or burning sensation. 

But Kelly had never experienced something as excruciating as the unexplained lesions emerging on sensitive areas of his body.

"This was on another level," he later recalled. "You can't control it. It feels like razor blades in a way, shocking you constantly."

What followed was nearly a month of tests, three emergency room trips, one infected sore, and finally, a lab-confirmed diagnosis: Monkeypox virus or, as it's known throughout the scientific community, MPXV.

"The physical aspect of what I went through was pretty bad, for certain moments. But what I realized was the mental health aspect of all of this was probably the main thing I was dealing with," he said. 

"It's such a long quarantine period."

He's not the only one facing pain, uncertainty and what can be a period of weeks-long isolation.

More than 200 Canadians and counting have been infected with MPXV as a result of a global outbreak that began in May. It's a virus known for long-lasting, often painful symptoms, and people are contagious until they recover.

Physicians, advocates, and health officials are now calling for more financial and housing support to ensure people can quarantine safely, if needed, for weeks on end — with COVID offering some key lessons on how to handle this emerging public health emergency.

Patients isolate until no longer contagious

The world is now used to terms like isolation and quarantine, thanks to the COVID pandemic. 

Recommendations meant to curb transmission of the coronavirus typically outlined isolation periods of five to 10 days, with governments and businesses offering various supports from isolation hotels to paid sick leave to the Canada Emergency Response Benefit, or CERB, which provided funding to people who couldn't work for COVID-related reasons.

For MPXV, current federal guidance suggests public health authorities isolate patients until they're deemed no longer contagious, which can take weeks —  even a month or more in some cases.

"Many folks during that long period, if they're forced to isolate, are not going to be able to go to work, are not going to be able to pay their bills, pay the rent, put food on the table," said Dr. Darrell Tan, an infectious diseases specialist who has treated multiple patients with MPXV at St. Michael's Hospital in Toronto.

"And these very, very real challenges that people face, because of their willingness to adhere to public health principles, is something that I think we, as a society, have to take responsibility for."

Governments can take cues from measures used against COVID, he added, whether that's more sick leave or support to ensure people can access essentials while alone at home.

"Things that can allow folks to successfully isolate at a time when they want to do the right thing, they want to protect their friends and family from getting something that they just suffered through."

'I've lost all my work'

Through his painful weeks-long MPXV ordeal, Kelly remained in isolation in his downtown Toronto apartment — only leaving for medical appointments — hoping to keep others from going through the same experience. 

Speaking to CBC News on a video call, the 28-year-old said he had to cancel his gig work throughout most of June, worried about how he'd pay his rent, and mainly relied on friends to drop off food and cash for his building's coin-operated laundry machine. 

"Financially, I've lost all my work," said the self-employed dancer and personal trainer, whose salary job at a Toronto dance company doesn't include the summer season. "There's a lot of layers to this."

While those stresses piled up, he endured an uncomfortable daily routine of wound care, constantly changing the bandages on his many lesions and doing regular rounds of laundry to kill any traces of virus on his blood-covered sheets. 

Kelly also visited an emergency room several times: once to get an MPXV test to figure out what was going on, a second time because of extreme pain caused by his internal lesions, and a third time several weeks into his illness after a wound on his foot became red and infected.

Even before his lab results officially confirmed an MPXV infection in mid-June, Kelly said Toronto Public Health did provide support, including phone check-ins, access to a social worker who could link him to medication deliveries, and a grocery store gift card that he wasn't sure how to use since he couldn't leave the house.

But as the weeks passed, and several of his lesions still wouldn't fully heal, he said the isolation period in his basement apartment became nearly unbearable, though easier than having to separate from roommates or family members in the same house.

"Luckily, I live alone and I have a full apartment," he said. "I can't imagine people who are isolating for over 21 days in a room."

Toronto exploring use of COVID isolation site

As cases began popping up in Montreal, then Toronto, then other Canadian cities in recent weeks, federal officials met with medical experts, provincial officials, and local health departments to explore "all the different ways we can break the chains of transmission," Canada's chief public health officer Dr. Theresa Tam said in response to questions from CBC News last week. 

Governments are working alongside community organizations, she said, to develop non-stigmatizing messaging, while vaccination campaigns against MPXV are underway in both Ontario and Quebec. More than 8,000 doses have been provided so far, mainly around Montreal and Toronto.

"I think all levels of government need to do what they can to support people in isolation, because we've learned, of course, throughout COVID-19 that people want to follow public health measures — but they need to be supported in certain instances to do so," Tam said.

Federally funded isolation sites could be one avenue, according to Toronto Public Health. The team there is exploring whether it's possible to use a voluntary COVID isolation facility for people who test positive for MPXV as well, if they can't isolate at home.

Tan, the infectious disease specialist from St. Michael's Hospital, said he wishes those kinds of efforts "were moving faster."

"I will say also that it's ironic that we have to even ask for these things to be put in place, because, again, we learned this lesson the hard way during COVID," he said.

"And I think the court of public opinion really landed on the side of recognizing just how important these things are."

Cases largely involve men who have sex with men

When this virus enters someone's body, it can take up to 21 days before symptoms appear. Cases can range in severity, and some people experience few — if any — of the telltale lesions.

But when they do emerge, for the majority of patients, the often painful, evolving rash typically lasts around two weeks to a month, and people are thought to be contagious from the onset of their symptoms until the last scab has fallen off.

During that time, multiple forms of close contact can spread the virus: skin-to-skin contact such as touching or sex, respiratory droplets in a conversation, or even being exposed to someone's contaminated clothes or bedding.

Perhaps through a stroke of initial bad luck, or due to a shift in how this virus transmits between humans — scientists aren't yet sure about the precise reasons — infections began emerging globally among sexual networks, primarily impacting men who have sex with men.

"It's important to note that gay, bi and queer men have long been at risk for housing and income insecurity as a result of the discrimination and stigma that they face just for being sexual and gender minorities," said Michael Kwag, director of knowledge exchange and policy development at the Community-Based Research Centre (CBRC), a Canadian organization which promotes the health of people of diverse sexualities and genders.

Kwag said an outbreak affecting men who have sex with men is putting an already vulnerable group at risk and could create major challenges to safe isolation, given the number of community members who are in precarious employment, don't have access to paid sick leave, or live in multi-roommate households to afford rent in major cities.

In early June, the CBRC sent a letter on behalf of dozens of advocacy organizations to federal Health Minister Jean-Yves Duclos, calling for emergency financial support — similar to CERB — which would kick in as soon as someone was told they needed to isolate for a confirmed or suspected MPXV infection. 

The group also stressed the need to expand supports like food or medication delivery services. So far, Kwag said, there has been no formal response, though the organizations are hopeful their message is being heard.

"The government has a real opportunity to make the decisive investments that are needed to support people who are told that they have monkeypox or that they might have it," he said.

"We really need to be doing everything that we can in order to ensure that this doesn't become a bigger problem."

'Stop stigmatizing'

And it's long been clear that anyone can catch MPXV. 

At times, the infection can turn deadly, largely among high-risk groups like young children or people who are pregnant. The virus lives in animal reservoirs, including its namesake monkeys and various other species, and has been spreading to humans for decades throughout certain regions of West and Central Africa. 

But the ongoing human-to-human spread observed in the current global outbreak is unusual. So is the fact that an overwhelming majority of cases are among one particular group. 

Kelly counts himself among Toronto's gay community and isn't shy discussing how he suspects he caught MPXV: at a local bathhouse. 

"I try to be very open about my sexuality and try to be very sex positive. For me, I clearly contracted it via sex — and that's not always the trajectory for a lot of people, but that's how it happened for me," he said.

"I hope people can understand that and have empathy, compassion, and understanding, and stop stigmatizing something ridiculous like this."

Finger-pointing around MPXV echoes, for many, the stigma around HIV, another virus that can infect anyone, regardless of their sexual orientation. Already, Kelly has received discriminatory messages on his personal social media channels, saying he caught "gaypox." 

"It happens to be affecting these communities at this time," he said, "but that doesn't mean it won't affect other people."

That's why, even though weeks spent inside his apartment took a toll on both his finances and mental health, Kelly was diligent about isolating for the full amount of time it took for his lesions to heal. 

On June 21, he got some good news from his public health contact: his time in quarantine was up.

Standing on his sun-dappled street, clad in jeans and a white tank top, Kelly reflected on his unexpected bout of MPXV. More support services would've made the weeks in isolation easier, he said, while opening isolation sites could help others who don't live alone. 

"Because there will be people that need them," he said.