For many gay and bisexual men, the widespread and chaotic monkeypox outbreak has turned a summer that should have been a well-deserved opportunity – after the peak of the Covid crisis – to finally have fun and enjoy themselves with their gay brothers without the threat of viral infection hanging over them .
Soon after Memorial Day, however, these men, as well as transgender and queer people—GBTQ for short, because lesbians’ monkeypox risk is low—were met head-on with harrowing reports of monkeypox’s often devastating and disfiguring effects on the body. Then came anger and frustration over what queer activists characterize as the Biden administration’s fumbling initial response to the outbreak.
Lost amid frenetic media and public health reports on monkeypox epidemiology, the delayed vaccine deliveries, and the wrangling over how best to communicate about the virus are the millions of GBTQ people whose happiness, well-being, and connectedness have in many cases been significantly compromised by the mere threat on monkeypox infection.
“Life has kind of stopped,” said Guillermo Rojas, 29, a Mexican citizen and public administration graduate in New York City. “This was supposed to be the big summer that everything went back and opened up.”
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 also triggers in that it goes back to the early days of the AIDS epidemic. It has a chilling effect on people’s sense of community, togetherness and belonging.”
Fortunately, there has been at most one American monkeypox death in the United States—a potential case in a severely immunocompromised person in Texas is under investigation—although the national number of cases has risen to 19,465 diagnoses. And after a slow start, the federal government has now distributed roughly 800,000 vials of vaccine, with a heady supply coming in short order.
But given how the virus, which causes disfiguring lesions that in some cases cause excruciating pain, is overwhelmingly spread during sex between men, the outbreak has cast a long shadow over the gay community.
More than 100 gay, bisexual, transgender and queer people responded to an NBC News online survey to find out how monkeypox has affected their lives. What this diverse cross-section of society had most in common was 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 plainly said, was contained in a cat’s cradle of fear – of infection, pain and suffering, of lonely and potentially financially devastating weeks of isolation at home should they contract the virus.
They spoke of a summer they had hoped would prove invincible, but which 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 showing that successful treatment of HIV blocks transmission of the virus has cultivated a resurgence of sexual liberation among many GBTQ people. Long-standing anxiety about HIV has subsided, and hookup apps have made meeting sexual partners as convenient as getting takeout — hence the term “order in.” As a result, people like Rojas have felt free to explore and enjoy sex in a way that queer people haven’t since the AIDS epidemic brought the sexual freedom enjoyed by gay men in the 1970s.
Then, in 2020, a new viral plague held the entire community together and yearning for freedom.
“Post-Covid,” Rojas said, recalling how he experienced the free-spirited bacchanalia that monkeypox arrived in New York City this spring, “everybody went crazy, and there were sex parties all over the city.”
Monkeypox quickly pushed the modern playbook of safer sex out the window. Queer people have been left wanting for answers about how to protect themselves and have expressed confusion as they have struggled to process mixed messages from public health leaders and journalists about what constitutes a significant risk of infection.
Rojas was one of the first US residents to receive the precious monkeypox vaccine in late June. But even with the benefit of his first jab with the two-dose vaccine, he has still severely curtailed what he had hoped would be a long-awaited summer of libertines.
“I’ve stopped going to sex parties,” he said, given that health authorities identified such gatherings of men as major risk factors for monkeypox. “I also stopped having sex with people who make a living from OnlyFans. I also stopped cruising the gym, I stopped going to Fire Island, and I stopped attending orgies.”
Evidence suggests a recent tidal shift in sexual behavior in response to monkeypox. According to the American Men’s Internet Survey, which in early August conducted an online survey 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 hooking- ups and 49% reduced partners met on hookup apps or on sex sites.
“It’s just a little, temporary pause until everyone gets the vaccine,” said Rojas, who remained so worried about living in the nation’s monkeypox epicenter that he moved 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 internal conflicts have arisen among GBTQ people this summer over the best ways to respond and communicate about monkeypox.
Michael Weinstein, the president of the Los Angeles-based AIDS Healthcare Foundation, dusted off his outspoken antipathy to PrEP and published a scathing rebuke of the sexual freedoms the HIV prevention pill has facilitated in an op-ed titled “Monkeypox Reckoning” in Los Angeles Blade on Monday. Weinstein is notorious for an unapologetically shrill, moralizing and fear-based approach to HIV prevention communication, an approach that is far out of step with the vast majority of the public health community. PrEP.”
“There has always been a sex-radical group that has defined gay liberation as absolute sexual freedom,” Weinstein wrote, blaming those freedoms.
For another man named Michael, who, like some interviewed, preferred to go only by his first name to protect his privacy, protecting himself from monkeypox by sacrificing the very sexual freedom that Weinstein throws out, he told a great price.
“I don’t change my behavior with a cheerful, take-one-for-the-team attitude,” said Michael, 42, who works in education in Philadelphia. “Instead, I find the situation horrible, miserable and diminishing. I experience this outbreak as a serious setback for something that is very important to me, namely sexual freedom.
“Sex,” he continued, “is not just a frivolous pastime. For many of us, sex has a serious meaning, sex is one of the things that make life worth living.”
After more than two years of Covid restrictions, the arrival on American shores of yet another major virus has also dealt a blow to the already strained mental health of many queer people, said LaRon Nelson, associate professor of nursing and public health at Yale University.
“The fear of contracting monkeypox and the concern about access to the vaccine has caused people to isolate themselves or continue to isolate themselves,” Nelson said. “That chronic exposure to this kind of stress also comes at the expense of their psychological well-being.”
J.J. Ryan, a bisexual trans man who was 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 life before transitioning. “So I was really excited to get out there and live my life — for this to finally be my ‘hot- boy summer.” Instead, he said, he has unfortunately “sharply scaled back” his sexual exploration.
Fears of resurgent discrimination
With so many broken social, romantic, familial and sexual connections lying in pieces around them, many respondents to NBC News’ survey said they further feared the monkeypox outbreak would fuel discrimination, hatred and even violence against LGBTQ people .
There is evidence — including a recent attack in Washington, D.C. – that such fear begins to manifest itself.
“My biggest concern in all of this is turning back the clock to less and less societal acceptance,” said Ryan, who is a Ph.D. student and policy researcher at a non-profit 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 everybody else” in a successful effort to secure many civil rights protections. He spoke of the conflict that members of this community now face when the details 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 politics in the United States, “the last thing you want to do is debunk that narrative — even if the picture is a little more nuanced, even if gay people live different lives than straight people, even if they express their sexuality more creatively, some might say more authentically.”
Brian Minalga, 36, who is non-binary and works in the HIV field in Seattle, said: “There’s this idea that there are good people with good behavior who have the good kind of sex. It’s moralistic and puritanical.”
Recapitulating racial disparities
For queer people of color, the outbreak has led to an unwelcome summary of the racial health disparities that have characterized both the HIV and Covid epidemics in the United States.
“We saw monkeypox start with more affluent white gay men, and then eventually seep into more diverse networks, and that includes men of color,” said Gregorio Millett, 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 actually already disproportionately affects blacks and Latinos. And yet large 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.
Seeing 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 countless ways he and his black gay peers have been dehumanized over time. He said he feared monkeypox, the very name evoking a racist trope, would only make matters worse.
“For black gay men, the last thing you need is to add a whole other discussion where you become this black carrier,” he said.
Three viruses, one sense of fear
For some GBTQ people, the fear of contagion instilled during the height of the Covid pandemic has led to further worries about monkeypox. The horrific history of the early AIDS epidemic serves as yet another backdrop.
“I decided several weeks ago that intimate contact is not worth the risk until I am fully vaccinated and the infection rate is under control,” said Steven Dwyer, 68, who is retired and based in Baltimore and has lived with HIV ever since. mid 1980s. “As a long-term AIDS survivor, I learned that it is better to be informed about disease outbreaks that may affect me.”
The situation of Jason, a screenwriter in the Los Angeles area in his late 20s, is a particularly profound example of how crippling anxiety about infectious diseases can be all-consuming. Jason has lived with OCD since childhood. It causes him intense fear of infection and contamination, as well as various compulsions in response to such thoughts and stimuli. The fear of Covid meant that he was mostly housebound. Now the outbreak of monkeypox has reinforced these fears just as he was beginning to feel more comfortable venturing out.
Jason lives with his girlfriend and they are monogamous, so contracting monkeypox sexually is not a concern. But suggestions that casual contact or contaminated surfaces can transmit monkeypox have made him reluctant to push his luck with his OCD. Consequently, for Jason, it is as if the cloistered first months of the Covid pandemic never ended.
“I’m probably one of the only people I know who still doesn’t go out much,” he said.
Many other GBTQ people said that monkeypox has made them hesitant to go to crowded places, such as concerts, bars and clubs – pleasant outings and chances to connect with other queer people after living through the lonely and boring high of Covid.
Jason has been agonizing over whether to attend an upcoming concert with a performer he loves, something he has been looking forward to for years since it was delayed due to the pandemic. And in a recent interview, Dwyer, who travels constantly, expressed concern about contracting monkeypox from hotel bedding.
Concerns about the transmission of monkeypox even led to the cancellation of a major concert at the Southern Decadence celebration in New Orleans, which takes place over the Labor Day weekend – even though it was supposed to be held outdoors.
Ryan said that when he visited his family in Philadelphia before he received his first monkeypox vaccination, his mother was hesitant to hug him for fear of the virus. It only exacerbated his own worries about perhaps unknowingly passing monkeypox to his young niece and nephew.
Such hesitancy from family members, said Ben Rosen, a psychotherapist at Harlem United in New York, parallels the cold shoulder many gay men received during the early AIDS crisis, “where people are told, ‘Oh maybe you shouldn’t come on visit. ‘”
However, recent research suggests that fears about the transmission of monkeypox in public settings and other relatively casual scenarios are most likely misplaced or at least grossly exaggerated. According to research articles and reports from global health authorities, cases of non-sexual transmission are uncommon to rare.
Last week, Dwyer concluded that bedding does not actually pose a significant risk.
Speaking to reporters on August 19, Dr. Demetre Daskalakis, the White House’s deputy director of monkeypox, said he believes attending crowded concerts is generally a low-risk activity. Just brushing someone off, he said, would likely be “low or no risk.”
Christopher Vasquez, 39, director of communications at the National Center for Lesbian Rights in San Francisco, said: “I think we have 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 due to Covid.”
The great work begins
Keuroghlian of the Fenway Institute said: “The solution is to see society’s amazing ability to organize in solidarity and to articulate the myriad ways queer activists have fought for a better response to monkeypox, including faster and wider access to vaccines. their needs.”
There are signs that such efforts are bearing fruit.
Recent reports suggest declines in transmission in New York, Chicago and San Francisco — likely the result, experts theorize, of changes in sexual behavior, increased vaccination and possibly immunity to previous infections.
With the challenging summer drawing to a close, Guillermo Rojas is fresh 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 about the future of the eruption.
“Once people start getting vaccinated and the second vaccine starts to kick in for most people, things should go 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 complete this confidential online survey and we can contact you for an interview.
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