With monkeypox, stigma challenges Minnesota health response

When Kyle Olson started feeling sick, he thought it was the flu or COVID-19. It started with full-body aches that lasted for over a week.

He slept for days, and started to feel a little better. Then he noticed the lesions. Because of where they were, every time he went to the bathroom it was intensely painful.

“It'd be so painful that I'd have to, like, lay down afterwards, because it took it all out of me,” Olson said.

He went to his doctor, who eventually confirmed the diagnosis of monkeypox. Later, Olson got a call from the Centers for Disease Control and Prevention, which told him to keep a log of everything he was experiencing. He signed paperwork, agreeing to stay in quarantine until he was cleared by a physician.

Olson worked to fill the time he was now required to spend inside by cleaning and reorganizing his apartment and spending more time online. Even though years of COVID helped him to adjust to an at-home lifestyle, this quarantine affected him differently. And despite cases of monkeypox climbing nationwide, and in Minnesota, Olson didn’t know how he got it. Or anyone else who had it.

“I think people are ashamed of it,” Olson said.

Monkeypox is a virus. It’s part of the same family of viruses as smallpox, but generally has milder symptoms and is usually not fatal. It’s been circulating in central and west Africa for years, and more recently across the world. It’s most often passed through close, prolonged skin-to-skin contact. State health officials say it can pass between sexual partners, family members, or in some cases by sharing bedsheets with someone who has the virus.

As of Aug. 30, Minnesota has 124 confirmed cases. Though there are some signs the virus is slowing in the U.S., it’s unclear if that will continue.

While anyone can catch monkeypox, so far the majority of the cases in the U.S. and in Minnesota are among men who identify as gay or bisexual, and men who have sex with men. Since cases began appearing in the country, there’s been an ongoing national conversation on how to address those most vulnerable to the disease without perpetuating bias.

That’s a challenge that public health officials in Minnesota have been navigating too.

“We had a little like pushback from [the] community about some of our earlier messaging, being stigmatizing or talking too much about gay [and] bisexual men, and some of the concerns around that,” said Jose Ramirez, HIV testing program supervisor at MDH.

So they broadened their messaging, emphasizing that anyone — regardless of gender identity or sexual orientation — could get monkeypox and should be exercising caution, while simultaneously working to provide more targeted outreach to those communities hit hardest by the virus.

“We really don't want to be missing people who might be spreading this virus unaware because they have latched onto the misinformation of the very stigmatizing image of what monkeypox is,” said Mattie Laidlaw, community engagement systems planner in MDH’s Center for Health Equity.

Despite these efforts, though, health officials say this stigma is still affecting how Minnesotans tackle monkeypox.

“It's really getting in the way of people getting tested,” Laidlaw said. “Particularly if you look at communities in greater Minnesota.”

Laidlaw said she’s heard stories of people not wanting to get tested to avoid invasive questioning by doctors about their sexual behaviors.

“[Those questions] aren’t really necessary for the provider who's doing the testing to know. They just need to see that there is a rash that's exhibiting and do a swab,” she said. “But because of how the dominant narrative has created this kind of story about what monkeypox is and who it impacts, it's making it challenging for people to go in to get tested because of that stigma.”

Part of what makes monkeypox so difficult to message around is that despite the fact that it can be transmitted during sex, it isn’t considered a sexually transmitted infection, or STI.

“It's sexually transmissible, but it's not sexually transmitted in the sense that it's only transmitted by sex,” said Dr. Michael Ross, professor of family medicine at the University of Minnesota. “That’s a distinction that many people just don't quite understand. But it's a very important one.”

While there have been calls from some to change that and label monkeypox as an STI — there is some research that suggests that sex may be spreading the virus more quickly — Minnesota health officials are reluctant to take that step.

“You can be exposed in other ways,” Ramirez reminds. “I think one of our biggest concerns is if people identify it as a sexually transmitted disease, people [will be] like: ‘Well, I'm not engaging in sexual activity, I don't have a risk, I'm fine.’ When very much someone who is in your circle of friends or family could have been exposed.”

Or that labeling it as an STI will result in shaming those who get it for what others consider to be risky actions.

Concerns about shaming

After Kyle Olson’s monkeypox diagnosis was confirmed, he says he felt alone. He went searching online and, not finding much information or community, felt he should be outspoken about it.

“I kind of had to make it my mission to talk about it because I know other people are probably secretly dealing with it,” he said.

Olson opened up about the diagnosis on his Facebook page, and people started reaching out. Some with concerns about his well-being, while others asked questions about the virus and the treatment he was on. Olson said he felt like it was bringing people together.

But it also put him in the spotlight.

Then one day, Olson was responding to messages on a hook-up site — not looking for anyone, just passing the time stuck in quarantine – when he got a DM.

“He knew my name and everything, but his profile was blank. And so I don't know who he is,” Olson said. “So he's like: ‘you're a slut, you shouldn't be online. You're endangering people.’”

Shame around public health issues isn’t unique to monkeypox. Particularly now, during a pandemic where there’s a divergence of opinion about whether calling attention to people for not wearing masks or traveling unnecessarily helps stop the spread of disease.

It’s particularly acute when it comes to STIs, which continue to be surrounded by stigma even though there are about 20 million new STI cases annually, according to the American Sexual Health Association.

Many aspects of the monkeypox outbreak, including the tendency to shame people for their actions, remind Dylan Boyer, director of development at the Aliveness Project, of the fight against HIV.

“We could not shame people into wearing condoms, we could not shame people into not having sex anymore,” he said. “You almost have to meet people with a harm reduction type of approach when it comes to these things. Give people accurate and accessible information along with access to care, let them make their own dignified choices, and what's good for them and their health.”

Kyle Olson, who was cleared to leave his monkeypox quarantine on Aug. 12, says people should learn more about the virus and how it affects individuals.

“It's a very painful experience to go through,” he said. “I wish more people had empathy in this state and country and world.”

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