What's it really like to have monkeypox? Patients and experts explain.

A man walks near a poster with monkeypox information at a local store at Fire Island-Cherry Grove, in New York, U.S., July 15, 2022. REUTERS/Eduardo Munoz
A man walks near a poster with monkeypox information in the gay enclave of Cherry Grove on Fire Island, in New York. (Photo: REUTERS/Eduardo Munoz)

So, what's it really like to have monkeypox? With the number of cases rising exponentially in the U.S. — at 2,323 recorded cases, according to the Centers for Disease Control and Prevention's latest count on Wednesday (up from 201 recorded cases in late June), and with the true numbers believed to be much higher — many, especially disproportionately affected gay and bisexual men, are anxiously clamoring for answers.

Some who have been affected are sharing — and the reports are grim.

"I thought I was going to die. I wouldn't wish it on my worst enemy," a young woman who goes by Kyrie Fluffins on TikTok tells Yahoo Life.

"It was pain I never felt before," a 48-year-old New Yorker named Fernando told a recent virtual monkeypox panel, "and never want to feel again."

"The sores are the worst part by far. Especially mine being on my tongue … so painful," shares a 36-year-old Brooklyn man, who requested anonymity for privacy reasons.

"It was so, so draining," Matthew Cancel, 27, a New York City–based publicist, tells Yahoo Life. He shared his monkeypox experience in a July 16 Instagram Story and was quickly inundated with people desperately looking for information and support.

"It's been wild to have people DM me and ask about symptoms," he says. "I have people DMing me if I can diagnose them or tell them what to do when they've gotten infected … they ask me to detail my timeline," Cancel adds, noting that he found the frenzied response to his post shocking and frightening.

Matthew Cancel
Matthew Cancel is a New York City resident who has been sharing his experience of monkeypox. (Photo courtesy of Matthew Cancel)

"It's really upsetting," says Cancel, who started feeling sick — with swollen lymph nodes, headache, fever and fatigue — on July 10, not long after dancing at crowded parties over Pride weekend, unsure of how he specifically got infected. Just before that, Cancel had begun researching monkeypox, gone on a fruitless search for the vaccine and reached out to medical professionals for guidance, only to be met with responses along the lines of "There is nothing to worry about," he says.

Now, he tells Yahoo Life, referring to New York's recently bungled vaccine-registration system, "I think not only did New York City completely drop the ball here, the CDC dropped the ball here, and people are concerned. They're worried. They don't know if they'll be infected, if they're high-risk." (This week, New York City, the epicenter of this outbreak, exceeded 650 cases, a figure that is believed to be an undercount.)

In addition to Cancel's Instagram, people have been sounding off about the situation in TikTok videos.

Why is information so hard to find?

Critics say the lack of monkeypox information and support can be traced to a host of factors, including the fact that public health warnings have been misleading and hesitant — specifically when it comes to not adequately informing men who have sex with men, for fear of creating or increasing stigma. Additionally, say experts, access to testing, vaccines and treatment has been woefully inadequate.

"The mess we have found ourselves in is shocking and very upsetting," Peter Staley, a pioneering HIV/AIDS activist and board member of the HIV-meds access organization PrEP4all, which has taken on the issue of monkeypox, said Friday on the podcast The Dishcast with Andrew Sullivan. "A lot of people in the gay community are comparing it to AIDS, which I think is an outrageous comparison. This is not the Reagan administration. Homophobia did not cause these f***ups. It's not AIDS 2.0 — but it is COVID 2.0, as we have not learned any lessons, and not fixed any HHS [U.S. Department of Health and Human Services] agencies like the CDC or BARDA [Biomedical Advanced Research and Development Authority]."

Nearly 800,000 vaccine doses have been sitting in a freezer in Denmark, Staley added, because of what he called the FDA's "arrogance" over not trusting Europe's testing and safety process. FDA vaccine overseer Dr. Peter Marks, meanwhile, told the Washington Post that the inspections were moving forward, vaccines were being flown to the U.S. as results are pending, and that the agency was working "diligently and as fast as we can." Now, just as the World Health Organization is considering declaring a global crisis, the vaccines are making their way to the U.S.

Another reason vaccines were not immediately ready to go, says Dr. Ashwin Vasan, primary care physician, epidemiologist and New York City Health Commissioner, is "structural racism."

Speaking on a virtual monkeypox panel on Friday for the New York City LGBTQ health clinic Callen-Lorde, which had seen 75 probable and 28 confirmed cases at that point, Vasan said, "The world has not really had a monkeypox plan, and that's largely because we've allowed it to become endemic in West Africa … because of structural racism. And we see that over and over again in global health — the idea that diseases 'over there' are not our problem."

Don Des Jarlais, professor of epidemiology at NYU School of Global Public Health, agrees, telling Yahoo Life it's not only to Africa that the U.S. turns a blind eye. "We allow other diseases to spread in Asia, in Latin America, in indigenous populations," he says. "So, it's a wider problem of people who don’t live in the U.S. and who speak other languages."

What's needed immediately, Des Jarlais says, is "more contact tracing, more people providing treatment and more people providing vaccination," adding: "Most of the screwups are really due to inadequacies of our public health infrastructure. … So no, we're not seeing a tremendous amount of homophobia, but we're also not getting good information out to men who have sex with men."

What we do know

Monkeypox, a rare disease with an unknown source, is part of the same family of viruses — variola — that causes smallpox, according to the CDC. It's not related to chickenpox, is rarely fatal and was discovered in 1958 in colonies of monkeys used for research; the first human case was recorded in 1970.

It is spread through direct contact with pustules, rashes, scabs or bodily fluids; via respiratory secretions during prolonged face-to-face contact or through kissing, sex or intimate physical contact; by touching clothing or linens that have been touched by the infectious rash or bodily fluids; and to a fetus via the placenta.

While there has been much confusion about how and why monkeypox can be contracted through sex, Des Jarlais notes, "It's not a sexually transmitted disease … 'sexually transmitted diseases' usually refers to diseases only transmitted sexually. … This is not, in that sense. It's transmitted primarily through skin-to-skin contact," including through sex. In Africa, he notes, lesions are generally seen on hands.

Still, the majority of those affected at this point have been men who have sex with men — whether gay, bisexual, pansexual or any other identity, a point Jonathan Van Ness took to TikTok this week. That concerns Cancel, who foresees a potential superspreader situation in an upcoming fundraising event this weekend in Fire Island (attracting about 3,500 revelers to the NYC gay enclave each year) and envisions how it will soon spread outside of so-called "gay circles."

Two monkeypox vaccines licensed by the U.S. Food and Drug Administration (FDA) are available — JYNNEOS (also known as Imvamune or Imvanex), which is in limited supply, and ACAM2000, a smallpox vaccine that's plentiful but comes with higher risks. There is no data yet on the effectiveness of either in the current outbreak, says the CDC.

The one known effective treatment is the antiviral Tecovirimat, or TPOXX — although it's difficult to get due to low supply, and largely experimental, as its FDA approval is for smallpox only.

What it feels like to have monkeypox — and the challenge of getting treatment

Cancel tells Yahoo Life that, beyond his own online research ahead of Pride weekend, he found no information — and that he does understand the comparison to the early days of AIDS "because people don't care and don't pay attention and aren’t listening … and that's the scariest part."

In late June, before his symptoms appeared, Cancel says, he could not find any information from local agencies. "I called 311 [NYC's general hotline], the NYC Health Department, emergency rooms, urgent cares, and my [primary care physician]," Cancel says. "Each person I spoke to was completely unaware of the outbreak and had no information for me about the vaccine or the disease."

When Cancel FaceTimed with his doctor, he was told he had mosquito bites and "not to quarantine." Soon after, he woke up with spots all over his body, and the early bumps had become larger, painful and blistered, as well as itchy. Though he was turned away from an urgent-care clinic and hung up on when he called an ER for help, a nurse practitioner eventually told him via FaceTime he probably did have monkeypox and prescribed him an antiviral, Acyclovir, typically used to manage shingles or chicken pox. That, combined with a daily tub soak with Epsom, sea salt and baking soda, seem to be helping. But it has all felt DIY.

"When you start calling ERs and they are declining to see you," he says, "you think, 'Wow, I really am alone in this situation,’ and you just kind of go into survival mode."

For Fernando, who is gay and used only his first name while sharing his story on Callen-Lorde's virtual monkeypox panel, the illness was more severe: After having three "sexual encounters" with the same man, in late June, he noticed two bumps on his anus. Extreme exhaustion followed, with aches, intense chills and a fever of 101.5 degrees. He used Motrin for pain, took a COVID rapid test that was negative and headed into the clinic to see a nurse practitioner.

"I will never forget her expression … she suggested monkeypox testing, and saw bumps all the way inside my anus, too," he shared with the panel. Then a rash broke out on his torso before spreading to his legs, arms and face. "I was crying and yelling in pain,” Fernando said, adding that on a scale of 1 to 100, the level of pain was "110" before he started the antiviral TPOXX. After that, he said, "It went down to 95."

His advice to other gay men, he said, is to "take a two- or three-week break from hooking up, until things cool down a little bit. … It's hard to tell if [others] have it, because the first rash can be very small or hidden."

The Brooklyn man, 36, who requested anonymity, says he attended a sex party and was contacted afterward by an attendee that he'd been infected. Soon after, he tells Yahoo Life, "My symptoms were fatigue, fever, body aches, night sweats due to fever, and sores on my tongue and upper lip," which were painful and lasted for about eight days. "The medical professionals I encountered were friendly and helpful, but you can tell this is new territory for them, because they were also cautious and it seemed liked there's a lot of unknown information, or at the very least information they didn’t want to share immediately," he says. "I was able to get tested only after specifically asking to be tested for [monkeypox]; it was never offered."

A family physician and chief medical officer at Callen-Lorde, Dr. Peter Meacher, also speaking on the monkeypox panel, said he's seen a wide range of symptoms in the clinic, from very mild to severe.

"Typically, … it’s fever, headache, muscle aches, exhaustion, swollen lymph nodes, which all may come first or at same time as the rash. It may be one small pimple — some have thought it's an ingrown hair… — but soon after, it becomes multiple pimples and blisters. They sometimes run together, and they are often painful early on," he said. "Some patients seem to quickly develop a lot of pain, especially at the part of the body that was infected in the first place — it may be the penis, anus, genitals, the mouth … which may make it very difficult to pee or to use the bowels."

Symptoms, Meacher added, usually come on seven to 14 days after exposure, but can be as soon as five or as long as 21, and a person can remain infectious for two to four weeks until all the skin lesions have completely healed over.

But it can last longer — and, contrary to what many believe, affects women, too. "I'm on week 4, and it’s not going away," Kyrie Fluffins, who posts on TikTok, told Yahoo Life via Instagram direct messaging. "My friend (woman) is on week 6 or 8 and it’s not going away. My doctor said it could take up to 8 weeks. I thought I was going to die alone in my room … I thought my [boyfriend] would find my dead body. I was afraid to go to sleep at night because I thought I wouldn’t wake up, and would wake up screaming in pain."

Fluffins, who is in her 30s and lives in California, believes she may have become infected through hotel linens or getting a massage. She has experienced symptoms including headaches; pus-filled bumps on her face, chest, hands and arms; loss of appetite; extreme fatigue; nausea, sensitivity to light; and kidney pain, but says she has been denied a prescription to the antivirals. Her doctor is treating her as having an active case of monkeypox but believes she was tested too late and that the lab "mishandled" her sample, giving no result.

"What inspired me to share my story," she explains of the detailed updates she has been posting on TikTok, "is at first, this was being painted as a 'gay' disease and that women 'couldn’t get it,' but I'm a straight woman, and I got it."

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