'Bursts of sharp jabbing pain': What it's like to have monkeypox – and the fight against stigma

In mid-June, Matt Ford learned someone he had been in contact with the weekend prior was experiencing monkeypox symptoms. The following weekend, intense flu-like symptoms hit the 30-year-old hard. Fever, chills, sore throat, coughing, swollen lymph nodes and sweating through his sheets at night.

After being swabbed for monkeypox at his doctor's office, flu-like symptoms lessened but lesions appeared and became "quite painful."

Dull, constant soreness. Bursts of sharp jabbing pain whenever he moved the wrong way or irritated a lesion.

His test results confirmed it: He had monkeypox too.

On Saturday, the World Health Organization's chief said the expanding monkeypox outbreak in more than 70 countries is an "extraordinary" situation that now qualifies as a global emergency. According to the U.S. Centers for Disease Control and Prevention, more than 16,000 cases of monkeypox have been reported in 74 countries since about May.

The U.S. has recorded at least 2,891 cases of monkeypox, yet the disease remains a mystery for many.

Caused by a virus in the same family as smallpox, monkeypox is transmissible through person-to-person contact with rashes, scabs or bodily fluids, as well as touching infected items like clothing. Symptoms, which can begin to appear seven to 14 days after exposure, include fever, muscle aches, exhaustion and a rash that can appear on the body. It is fatal for up to 1 in 10 people, the World Health Organization says. No deaths have been reported in the current U.S. outbreak.

The virus is not considered a sexually transmitted disease, though it can be transmitted through close personal contact with sores or bodily fluids, such as what happens during sexual activity, Dr. John Brooks, a medical epidemiologist with the CDC's Division of HIV/AIDS Prevention, previously said. 

USA TODAY spoke to people who either experienced monkeypox or got vaccinated against it and learned that the fight against stigma will be as important as fighting yet another circulating virus.

More: How to get a vaccine against monkeypox in the US. Who should get one?

More: World Health Organization says monkeypox outbreak is now a global emergency

What it is like to have monkeypox, get the vaccine

Ford says his illness was overall a "pretty miserable experience." It prompted him to cancel his New York City Pride plans and remain isolated in Los Angeles, taking prescribed painkillers to help manage the discomfort.

"More lesions started to appear throughout the next week – a couple of concentrations on my arms, on my face and on more sensitive skin like in the underwear area. Then more popped up on my legs, arms, everywhere," he says.

This past weekend, the pain started to subside, and he's been sharing his experience on social media to help inform others and urge them to get vaccinated.

More than 1.6 million vaccines to combat monkeypox will be released in the U.S. throughout the rest of the year, and anyone possibly exposed to the virus is encouraged to get vaccinated, federal health officials said Tuesday. But the current rollout has led to some confusion.

One person who decided to get the vaccine is Will Kellogg, a 29-year-old based in Brooklyn, New York, who said "it just made sense" once he heard there was one available.

"I am a gay man and obviously I know a lot of gay people and spend a lot of time with them. So it just seemed like the most proactive thing to do," he explains. "I can obviously protect myself, but in theory, if it can decrease the amount of cases among gay people, it won't necessarily spread to everybody else."

Despite his willingness, the journey to get the jab was a bit more challenging.

"I had seen a tweet about it – that doses were suddenly available last Thursday. I wasn't able to make an appointment online, so I called after seeing some people had success calling to make appointments," he explained. Although he made an appointment over the phone for the next day, when he arrived, he found out he wasn't actually in the system. After "a little bit of phone tag," he was contacted about another appointment for a later date.

Getting the vaccine itself was fine, he added, saying it was similar to getting a COVID-19 vaccine.

Murray Penner, an HIV advocate who works in the public health space, had been following the monkeypox outbreak closely and was ready to get vaccinated when shots became available in his home in Washington, D.C.

As soon as he saw a tweet from the mayor informing the public of vaccination appointments rolling out in the coming minutes, he hopped on his computer and was able to seamlessly book an appointment for the next day.

"I know a lot of people had trouble using the website and getting it to work because I think a lot of people were trying, but I guess I was just fortunate and got through," the 60-year-old said.

What needs to be improved? And how does stigma play a role?

Kellogg says he's happy to have gotten the vaccine, and doesn't want to downplay the importance of it, but adds it's "definitely been a little frustrating."

He questioned why health officials didn't start distributing these vaccines sooner when the technology was already available.

"Clearly based on the amount of people that were willing to drop everything and go get this vaccine in the middle of the day on a Thursday, people are willing to take it."

While there are no treatments specifically for monkeypox infections, smallpox viruses are genetically similar, meaning smallpox vaccines could be used to prevent monkeypox infections. The Jynneos vaccine is one of those vaccines, and it was approved by the Food and Drug Administration in 2019 for monkeypox prevention in people ages 18 and older. It requires two doses, taken four weeks apart.

For those who are already dealing with the painful symptoms of the virus, Ford wishes it was also easier to access treatment options like Tecovirimat (or TPOXX), an antiviral drug developed and approved by the FDA to treat smallpox and may be considered for emergency treatment of viruses such as monkeypox.

Penner found the website to sign up for vaccination convenient but the physical vaccination site not so much.

After providing his proof of residency and filling out forms, Penner found the room "a little disturbing." It sparked memories of his experience in the 1980s and ’90s HIV clinics, with mostly gay men lined up in spaced-out chairs waiting to be called.

He noted a "somber" and "clinical" feeling in the space as people waited to get vaccinated, but also noticed something else: The room was overwhelmingly young and white, with the exception of "maybe one or two people," he recalled.

"Where's the equity in this? We always talk about health equity and reaching populations that normally don't have access to things like this, and it just looked very white," he says, pointing to systemic barriers that limit access.

"I don't think there were any evening appointments, so if someone is working, they're not going to be able to do it. And if you're not active on social media, how do you find out about this?"

People with privilege may also feel more comfortable speaking out about their experience with monkeypox more so than people with intersecting identities of less privilege.

The name of the virus has also sparked racism concerns. Earlier this month, more than 30 international scientists said the monkeypox label is discriminatory and stigmatizing with an “urgent” need to rename it.

Plus, a delicate balance remains at play when it comes to informing men who have sex with men about the virus (who make up the majority of current cases) without causing stigma.

"I absolutely feel like there needs to be education to the gay community about it," Penner says but understands how the focus on gay men may fuel some to place blame. " 'Now they're starting another disease' – I can hear it. "

As of now, however, Penner says he's been impressed with the federal and state response in using inclusive, non-stigmatizing language surrounding the virus.

Still, Kellogg worries about a lack of education in the broader population, especially if the virus gets painted as a sexually transmitted disease only focused on affecting queer men.

"(It's) spread from close contact or skin-to-skin contact, which obviously includes sex, but isn't the only way you can get it," he explains.

Ford agrees it's not useful to "stigmatize any part of this because it doesn't serve anyone – and the reality is that it's not only affecting gay men."

USA TODAY has reached out to DC Health and NYC Health for comment.

If you've experienced monkeypox or have gotten vaccinated against it, we'd love to hear from you. Please contact smoniuszko@gannett.com if you're willing to share your experience for a potential follow-up story.

Contributing: Jordan Mendoza and Mike Snider, USA TODAY; The Associated Press

More: Monkeypox cases may be mistaken for a sexual transmitted disease, CDC warns

This article originally appeared on USA TODAY: Monkeypox: What it's like to have the virus, get vaccine