For many gay and bisexual men, the sprawling and chaotic monkeypox outbreak has upended a summer that was supposed to be a well-earned opportunity — following the peak of the Covid crisis — to finally have some fun and revel with their gay brothers without the threat of viral infection hanging over them.
Soon after Memorial Day, however, these men, as well as transgender individuals and other queer people — GBTQ for short, because lesbians’ monkeypox risk is remote — were met head-on with harrowing reports about monkeypox’s often devastating and disfiguring effects on the body. Next came anger and frustration over what queer activists characterize as the Biden administration’s fumbling initial response to the outbreak.
Lost amid the frantic media and public health reports about monkeypox epidemiology, the delayed vaccine deliveries and the squabbling over how best to communicate about the virus are the millions of GBTQ people whose happiness, well-being and connection to one another have in many cases been considerably compromised by the mere threat of monkeypox infection.
“Life has sort of halted,” said Guillermo Rojas, 29, a Mexican citizen and public administration graduate student in New York City. “This was supposed to be the great summer that everything went back and opened.”
Dr. Alex Keuroghlian, a psychiatrist at the LGBTQ-health-focused Fenway Institute in Boston, said the outbreak has “been extremely distressing for community members and is also triggering in that it harkens back to the early days of the AIDS epidemic. It has a chilling effect on people’s sense of community, cohesion and belonging.”
Fortunately, there has been at most one U.S. monkeypox death in the U.S. — a potential case in a severely immunocompromised person in Texas is under investigation — even as the national case count has swelled to 19,465 diagnoses. And after a slow start, the federal government has now doled out approximately 800,000 vaccine vials, with a heady supply arriving in short order.
But provided how the virus, which gives rise to unsightly lesions that in some cases cause excruciating pain, is overwhelmingly spreading during sex between men, the outbreak has cast a long shadow over the gay community.
Over 100 gay, bisexual, transgender and queer people responded to an NBC News online survey seeking to learn about how monkeypox has affected their lives. What this diverse cross-section of the community most had in common were missed opportunities. They wrote about sex they never had, dates they never went on and gatherings with friends they avoided.
All that avoidance, the respondents made evident, was enmeshed in a cat’s cradle of fear — of contagion, of pain and suffering, of lonely and potentially financially ruinous weeks of isolation at home should they contract the virus.
They spoke of a summer they had hoped would prove invincible but that for them has turned out to be anything but.
A decade of sexual liberation, interrupted
Over the past 10 years, the introduction of PrEP, the HIV prevention pill, and the emergence of landmark studies proving that successfully treating HIV blocks transmission of the virus have cultivated a resurgent sexual liberation among many GBTQ people. Long-standing anxieties about HIV have eased, and hookup apps have made meeting sexual partners as convenient as procuring takeout — hence the term “ordering in.” As a result, people like Rojas have felt free to explore and revel in sex in a way queer people haven’t since the AIDS epidemic brought to a crashing close the sexual freedoms gay men enjoyed during the 1970s.
Then, in 2020, a new viral plague kept all of society cooped up and longing for freedom.
“Post-Covid,” said Rojas, recalling how he experienced the free-spirited bacchanalia into which monkeypox arrived in New York City this spring, “everybody went crazy, and there were sex parties all over town.”
Monkeypox swiftly pushed the contemporary safer-sex playbook out the window. Queer people have been left scrambling for answers about how to protect themselves and have expressed bewilderment as they’ve struggled to process mixed messaging from public health leaders and journalists about what poses a substantial risk of infection.
Rojas was one of the first U.S. residents to receive the prized monkeypox vaccine, in late June. But even with the benefit of his first jab of the two-dose vaccine, he has still sharply curtailed what he had hoped would be a long-awaited libertine summer.
“I’ve stopped going to sex parties,” he said, given that public health authorities identified such gatherings of men as major monkeypox risk factors. “I also stopped having sex with people who live off their OnlyFans. I additionally stopped cruising at the gym, I did not continue to go to Fire Island, and I stopped attending orgies.”
Evidence suggests a recent tidal shift in sexual behaviors in responses to monkeypox. According to the American Men’s Internet Survey, which conducted an online poll in early August of 824 gay, bisexual and other men who have sex with men, 48% reported reducing their number of sexual partners because of the outbreak, while 50% reduced hook-ups and 49% reduced partners met on hookup apps or at sex venues.
“It’s just a small, temporary break until everybody gets the vaccine,” said Rojas, who remained so concerned about living in the nation’s monkeypox epicenter that he decamped to his family’s home in Mexico City for the summer.
Fighting over — and for — sexual freedom
Not everyone in the queer community has been on the same page regarding monkeypox precautions. Just as battles over mask mandates and school closures have turned neighbor against neighbor during the Covid pandemic, fierce internecine conflicts have arisen among GBTQ people this summer about the best ways to respond to and communicate about monkeypox.
Michael Weinstein, the president of the Los Angeles-based AIDS Healthcare Foundation, dusted off his outspoken antipathy toward PrEP and published a scathing rebuke of the sexual liberties the HIV-prevention pill has facilitated in an op-ed titled “Monkeypox Reckoning” in the Los Angeles Blade on Monday. Notorious for an unapologetically strident, moralizing and fear-based approach to HIV-prevention communication, one that is far out of step with that of the vast majority of the public health community, Weinstein decried “a wholesale abandonment of safer sex promotion in favor of PrEP.”
“There has always been a sex radical group that has defined gay liberation as absolute sexual freedom,” Weinstein wrote, blaming monkeypox on those freedoms.
For another man named Michael, who like some people interviewed preferred to go only by his first name to shield his privacy, protecting himself against monkeypox by sacrificing the very sexual freedoms that Weinstein castigates has come, he said, at a great cost.
“I am not changing my behavior with an attitude of cheerful, take-one-for-the-team compliance,” said Michael, 42, who works in education in Philadelphia. “Instead, I find the situation fearful, miserable and diminishing. I am experiencing this outbreak as a serious setback to something that is very important to me, namely sexual freedom.
“Sex,” he continued, “isn’t just a frivolous pastime. For many of us, sex has serious meaning, sex is one of the things that makes life worth living.”
After more than two years of Covid restrictions, the arrival on U.S. shores of yet another major virus has also dealt a blow to the already strained mental health of many queer people, said LaRon Nelson, an associate professor of nursing and public health at Yale University.
“The fear of contracting monkeypox and the concern about access to the vaccine have led people to isolate or continue to isolate,” Nelson said. “That chronic exposure to this type of stress also comes at the expense of their psychological well-being.”
J.J. Ryan, a bisexual trans man assigned female at birth, spent the height of the Covid pandemic transitioning.
“I felt like I was just surviving before. I wasn’t really living,” Ryan, 34, said of his pre-transition life. “So I was really excited to get out and live my life — for this to finally be my ‘hot-boy summer.’” Instead, he said, he has sadly “sharply reduced” his sexual exploration.
Fears of resurgent discrimination
With so many broken social, romantic, familial and sexual connections lying in pieces around them, many of the respondents to NBC News’ survey said they further dreaded that the monkeypox outbreak would fuel discrimination, hate and even violence toward LGBTQ people.
There is evidence — including a recent attack in Washington, D.C. — that such fears are beginning to manifest.
“My greatest worry in all of this is the turning of the clock back to less and less acceptance society-wise,” said Ryan, who is a Ph.D. student and a policy researcher at a nonprofit research organization in Washington.
John Pachankis, a psychologist at the Yale School of Public Health, noted how for the past two decades, queer advocacy organizations have pushed “a narrative that gay people are just like everyone else” in a successful effort to secure many civil rights protections. He spoke to the conflict that members of this community now face when the particulars of gay sex lie at the heart of the monkeypox outbreak and, as during the AIDS crisis, have become fodder for intense public debate.
“In the context of the real threat of those rights’ being taken away,” Pachankis said, referring to the recent rising tide of anti-LGBTQ sentiment and policies in the U.S., “the last thing that you want to do is disconfirm that narrative — even if the picture is a little more nuanced, even if gay people do live distinct lives from straight people, even if they express their sexuality more creatively, some might say more authentically.”
Brian Minalga, 36, who is gender nonbinary and works in the HIV field in Seattle, said: “There’s this idea that there are good people with good behaviors having the good type of sex. It’s moralistic and puritanical.”
Recapitulating racial disparities
For queer people of color, the outbreak has brought an unwelcome recapitulation of the racial health disparities that have characterized both the HIV and the Covid epidemics in the U.S.
“We saw monkeypox start with more affluent white gay men, and then eventually it seeped into more diverse networks, and that includes men of color,” said Gregorio Millett, the director of public policy at amfAR, The Foundation for AIDS Research.
The Centers for Disease Control and Prevention and various state and local health departments have reported that monkeypox is indeed already disproportionately affecting Blacks and Latinos. And yet outsize shares of the vaccines have tended to go to whites — thanks, health advocates say, to structural factors that favor access to more privileged members of society.
Watching such patterns play out “is painful,” said Carlos E. Rodríguez-Díaz, an associate professor at the Milken Institute School of Public Health at George Washington University, “because it’s a reminder of the presence of systemic racism.”
Matthew Rose, 36, a health equity advocate in Washington, D.C., spoke to the myriad ways he and his Black gay peers have been dehumanized over time. He said he feared that monkeypox, the very name of which evokes a racist trope, will only worsen matters.
“For Black gay men, the last thing you need is to add a whole other discussion where you become this Black vector of disease,” he said.
Three viruses, one sense of fear
For some GBTQ people, fears of contagion instilled during the height of the Covid pandemic have primed further anxieties about monkeypox. The rueful history of the early AIDS epidemic serves as yet another backdrop.
“I decided several weeks ago that intimate contact isn’t worth the risk until I am fully vaccinated and the infection rate is under control,” said Steven Dwyer, 68, who is retired and based out of Baltimore and has been living with HIV since the mid-1980s. “As a long-term AIDS survivor, I learned it’s better to get informed about disease outbreaks that could affect me.”
The plight of Jason, a Los Angeles-area screenwriter in his late 20s, is a particularly profound example of the way crippling anxieties about infectious disease can be all-consuming. Jason has lived with obsessive compulsive disorder since childhood. It causes him intense dread of contagion and contamination, as well as various compulsions in response to such thoughts and stimuli. Fear of Covid left him largely housebound. Now the monkeypox outbreak has magnified those fears just as he was starting to feel more comfortable with venturing outside.
Jason lives with his boyfriend, and they’re monogamous, so contracting monkeypox sexually isn’t a concern. But suggestions that casual contact or contaminated surfaces can transmit monkeypox have left him reluctant to push his luck with his OCD. Consequently, for Jason, it’s as if those cloistered first few months of the Covid pandemic never ended.
“I am probably one of the only people I know that still doesn’t really go out much,” he said.
Many other GBTQ people said monkeypox has led them to question going to crowded spaces, such as concerts, bars and clubs — enjoyable outings and chances to connect with fellow queer people after having lived through the lonely and dull height of Covid.
Jason has been agonizing over whether to attend an upcoming concert of a performer he loves, something he has been looking forward to for years since it got delayed because of the pandemic. And in a recent interview, Dwyer, who travels constantly, expressed concern about contracting monkeypox from hotel linens.
Worries about monkeypox transmission even led to the cancellation of a major concert at the Southern Decadence celebration in New Orleans, which takes place over Labor Day weekend — even though it was to have been held outdoors.
Ryan said that when he visited his family in Philadelphia before he got his first monkeypox vaccination, his mother was hesitant to hug him for fear of the virus. That only aggravated his own worries about perhaps unknowingly passing monkeypox to his young niece and nephew.
Such hesitance from family members, said Ben Rosen, a psychotherapist at Harlem United in New York, parallels the cold shoulder many gay men got during the early AIDS crisis, “where people are being told, ‘Oh maybe you shouldn’t come visit.’”
Recent research suggests, however, that anxieties about monkeypox transmission in public settings and other relatively casual scenarios are most likely misplaced or at least grossly overblown. According to research papers and reports from global health authorities, cases of nonsexual transmission are uncommon to rare.
Last week, Dwyer concluded that bed sheets don’t actually pose a substantial risk.
On an Aug. 19 call with reporters, Dr. Demetre Daskalakis, the deputy for the White House’s monkeypox response, said he believes attending crowded concerts is generally a low-risk activity. Merely brushing by someone, he said, is likely to be “low or no risk.”
Christopher Vasquez, 39, the director of communications at the National Center for Lesbian Rights in San Francisco, said: “I think we need to be very careful about overreacting and shutting down events. Especially after two-plus years of the LGBTQ community feeling the effects of loneliness and depression because of Covid.”
The great work begins
Praising the myriad ways queer activists have fought for a better response to monkeypox, including faster and broader access to vaccines, Keuroghlian of the Fenway Institute said, “The silver lining is to see the amazing ability of our community to organize with solidarity and to articulate their needs.”
There are signs such efforts are bearing fruit.
Recent reports suggest transmission slowdowns in New York, Chicago and San Francisco — likely the result, experts theorize, of changes in sexual behavior, increased vaccination and possibly immunity from past infection.
With the challenging summer coming to a close, Guillermo Rojas is freshly back in New York for the fall semester of his graduate studies at Columbia University. Sitting in Manhattan’s Lincoln Center on a humid late-summer afternoon just after a cloudburst, he expressed optimism over the future of the outbreak.
“As people start getting vaccinated and the second vaccine starts kicking in for most people, things should get back to normal,” he said.
He got his own second shot on Wednesday.
Editor’s note: NBC News would like to hear from people who have recovered from monkeypox infection. If you have, please fill out this confidential online survey, and we may contact you for an interview.