Diagnosed with monkeypox, he felt pain, exhaustion — and was frustrated by the lack of support

He was just so tired.

That's the first thing Len Tooley remembers of the signs that he might be sick.

Weeks later, he can't remember the TV he tried to stream before crashing into a heavy sleep. For two days, even sending a text felt like a battle. He had body aches. A splitting headache left him vomiting.

Then came a pox. Or at least, what seemed like a pox.

I saw this little pimple show up on my butt," he says. And it was on Monday that I thought, I think I have monkeypox.' "

Tooley is one of at least 539 Canadians who have contracted monkeypox in the past two months. He's going public, to let others know that they aren't alone.

He says the community of gay and bisexual men currently most at risk for monkeypox has largely been left in the dark by public health when it comes to how to take care of themselves if they become sick.

There's really no information. People can be really on their own."

Also, with people faced with weeks of missed work after a monkeypox diagnosis, Tooley says the province's sick days are inadequate and two years into a pandemic, the health-care system is still not built up to care for those with unpredictable illness.

Tooley says he's spent any down time - when not exhausted - to create a website with information about his experience and what care has worked. He's spent hours pouring everything he knows about the illness into the site https://www.igotmpox.com/

Tooley was vaccinated at a Toronto bathhouse clinic. It's likely he had already been infected, he now realizes.

He's doing a bit better. But it took three weeks to get back to work, and at half-capacity.

When his work meetings are done by late afternoon, he finds himself collapsing on the couch and sleeping for up to six hours into the evening. Cooking Thai food was a passion; lately he's relied on Pizza Nova.

As of July 14, there have been 194 cases of monkeypox in Ontario, with 151 of those cases in Toronto. In Canada there are 539 cases in total, with most in Quebec.

More than 9,500 doses of Imvamune, the smallpox vaccine used to combat monkeypox, have been administered in Ontario. Ontario is continuing to work with the federal government to procure more doses, and supply numbers are not being disclosed at this time, the Ministry of Health told the Star.

The illness is spread mostly due to prolonged close contact" through respiratory droplets from breathing, talking, coughing or sneezing, or through skin-to-skin contact, along with contact with objects that have been used by someone with the virus.

According to Toronto Public Health, monkeypox is currently spread mostly through sexual contact and it does not spread as easily as COVID-19.

So far the outbreak has primarily affected men who have sex with other men. Public health officials and health experts have stressed this is who the illness is impacting currently and has nothing directly to do with sexual orientation.

The public health response to monkeypox has been much improved compared to the reaction decades ago to HIV/AIDS, which saw rampant stigma that sometimes led those who were diagnosed be exiled from their communities. But people with monkeypox are lacking guidance from the health system, says Tooley, who is the evaluation director at the Community-Based Research Centre, which supports health care for the LGBTQ+ community through research and development.

Just a few days before he started feeling sick, Tooley said he found out about the Toronto vaccination effort at the Steamworks bathhouse through a friend working there. The city started its vaccination effort in mid-June.

The lineup at Steamworks was unbelievably long" and Tooley received his vaccine after more than three hours of waiting.

Already people were recognizing they might have some potential risk for monkeypox and were doing what they needed to" by getting vaccinated, he says.

Two days later Tooley started to feel tired, thinking it was a vaccine hangover."

He took a nap Friday and pretty much slept until Monday," he says. And on Saturday or Sunday I noticed just the tiniest start of a pox on my butt cheek. And I was very much wondering, could this possibly be monkeypox?'

I'm in the right population, I live in the right place, all the factors aligned for me."

By Tuesday, June 21, Tooley said multiple pox on his body became more apparent, and growing in size, looking more like zits. He contacted Dr. Darrell Tan, an infectious diseases physician at St. Michael's Hospital, who he knew from his work with public health..

That same day, Tooley was contacted by a friend and sexual partner who also had symptoms, and they were sure Tooley had passed the virus to him.

By that point, I probably had three or four pox. They are unmistakable, they are pretty big and can be pretty painful," he says. By the third or fourth day it was a mix of itchiness and pain." On a scale of one to 10, the pain was a seven, he says.

He's confident he was infected through sexual contact, though he contacted other partners and none of them said they'd been infected, says Tooley.

Tan brought Tooley into the hospital immediately to be examined and tested. He completed a suite" of tests that he now repeats weekly, including taking swabs from the pox, blood tests and urine tests along with a throat nose and rectal swab.

It was clear Tooley had monkeypox based on the symptoms and he continued isolating. However, public health did not contact him with his official results until the weekend, he says.

That first week, I was so low-energy, and pretty uncomfortable and there wasn't much I could do even if I wanted to," he says. I had a fever at one or two points ... there were six days where it was almost flu-like, and then it developed into the pox phase. And the exhaustion has been persistent throughout," he explains.

I can't even believe it that I'm still so exhausted ... I'm in my fourth week of this."

His personal interest in wound care and public health knowledge meant that Tooley was able to reduce his discomfort by doing daily pox care, by covering them with a dressing called alginate, which keeps wounds moist and minimizes infection. He also used a covering called Tegaderm that's similar to a clear plastic, that is flexible and stays on the skin, he says.

The first week was not only me doing that to myself but my friend would come over, and we would spend an hour doing pox care with him as well."

There are some parallels between the uncertainty of what monkeypox is and how to treat it, and the endless unknowns around HIV and AIDS in the 1980s, says Tooley.

We were two of the first 40 (monkeypox) cases in Toronto ... nobody knew what to do. It was us taking care of each other," he says. And Tooley's friend has had it worse - he ended up with a pox in his eye, and has had to be prescribed an antiviral called Tpoxx, meant for those who may become severely ill.

On a recent Zoom call with community health organizations and public health officials, Tooley says he asked what referral pathways are available for people to receive support. And it was one of the few times in my career that there was literally zero response ... and this is quite a ways into the outbreak," says Tooley. That was pretty frustrating." (However, Dr. Tan has ensured that he and his friend have had excellent care, he adds.)

Tan, who is also an associate professor of medicine at the University of Toronto, said the emergence of monkeypox in the community is very new, and it's challenging to sort out the public health response and how best to support patients.

Levels of patient care should include individualized care and support, like offering symptom relief or suggestions, he says. How to care for patients with monkeypox is something the system is learning through avenues like community engagement, he adds.

We're getting input at all stages of the way," he says. I agree that there isn't much (information) out there."

The response to monkeypox so far from Canada and provinces including Ontario and Quebec has been adequate, but communication can be improved regarding more inclusive language in vaccination eligibility, as it should include non-binary people and trans women, says Todd Coleman, an epidemiologist specializing in LGBTQ health.

Coleman says community health organizations are also taking up the job of getting public health information out and offering support, and they do so with less funding and resources.

They tend to mobilize and work on a diminished capacity of what's available to public health agencies," he says.

Tooley worked at a clinic for a decade, testing people for HIV. He says he saw the effects of shame and stigma.

And that's why he wants to dismantle that stigma when it comes to monkeypox.

Nobody deserves this, nobody asked for this. Monkeypox and all other infectious diseases are bigger than any one person has control over.

Olivia Bowden is a Toronto-based staff reporter for the Star. Reach her via email: obowden@thestar.ca