For over two years, 27-year-old Edi Whitehead hasn’t been able to stand for more than a few minutes without feeling like they are going to pass out. Since contracting COVID-19 in 2020, they have experienced torturous headaches and difficulty breathing, but these acute aspects of the illness have since waned and evolved into a cluster of disabling symptoms, including debilitating fatigue and cognitive dysfunction. Whitehead, who is trans, is one of an estimated 2 million people in the U.K. living with long COVID, or long-term, ongoing health problems as a result of being infected with COVID-19.
Long COVID is hard to diagnose, partly because it encompasses a broad constellation of possible health problems; it can manifest as cognitive impairment, shortness of breath, heart palpitations, and some 200 other symptoms. These post-COVID conditions can affect multiple organ systems, last for years, and have shown themselves to be alarmingly common; the latest U.S. Census Bureau Household Pulse survey estimates that nearly 18% of people who have contracted COVID-19 in America may be living with long COVID. Meanwhile, the U.S. Government Accountability Office has estimated that post-COVID health problems have left as many as 1 million American adults unable to work.
In addition to showing higher rates of long COVID in younger adult populations and women, the Census Bureau survey also revealed that trans and bisexual adults are much more likely to report having the disease. Compared to 5% of cisgender men and 9% of cisgender women, 15% of trans adults in the U.S. say they are currently experiencing long COVID symptoms. Meanwhile, 12% of bisexual adults in the U.S. are living with post-COVID conditions, compared to 7% of straight, gay, and lesbian adults. Those rates mirror broader health disparities experienced by the trans and bisexual communities — and point to disconcerting ways our healthcare systems may be failing them.
In a world where transgender people are more likely to live with chronic illness in the first place, this may not seem so surprising. “Of course [trans people] have higher rates of long COVID,” says JD Davids, co-founder of the advocacy and policy group The Network for Long COVID Justice. “We have lower rates of being treated as humans. People who are denied access to health care, resources, or bodily safety are at higher risk of ill health outcomes, including this massive disabling event known as long COVID.” Davids has lived with long COVID since March 2021, and has also lived for decades with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), a similarly debilitating condition.
Long COVID’s effects can be arduous. Whitehead, who once enjoyed playing soccer with friends, is now physically disabled and uses a mobility scooter. “I spent two years trying to manage my life to the point where I can do part time work and feel some semblance of the lives that my friends are living,” Whitehead says. Like many of those with long COVID, Whitehead worries that reinfection could worsen their symptoms or outcomes. Repeated COVID infections may put individuals at a greater risk of developing long COVID, and with LGBTQ+ people at a greater risk of COVID infection in general, that leaves queer and trans communities at a heightened risk for the disease. “A society that continually puts trans and bisexual people in harm's way is going to be rolling those dice more and more often,” Davids adds.
There is nothing inherent about being queer or trans that predisposes people to chronic illness, including long COVID. Yet the interlocking network of structural healthcare disparities that queer and trans people face — such as lower access to doctors or stigma regarding their gender or sexuality — could partly explain the higher rates, alongside other LGBTQ+ health disparities faced by the community.
Those health disparities may also explain why bisexual and trans people experience long COVID at higher rates than lesbians or gay men. Because of the heightened stress and stigma associated with bisexuality, bisexual people experience worse health outcomes overall than gay or lesbian people. The same goes for trans people, who often experience outright discrimination and stigma from health care providers. These inequalities can create fertile ground for chronic illness and disability, two factors that can put someone at risk for developing long COVID.
Another reason queer, trans, and bisexual adults might be overrepresented among people with long COVID is that they’re more likely to recognize what long COVID is in the first place. That’s because queer people are used to responding to health emergencies like the HIV/AIDS epidemic, which created a network of advocates who used their experience responding to that crisis in the wake of COVID-19, including by disseminating knowledge about acute and chronic COVID infection. “We only make our efforts to challenge the AIDS crisis stronger by mobilizing to confront COVID-19 inequities at the same time,” Asia Russel, the executive director of Health Global Access Project and a former organizer of ACT UP Philadelphia, told In These Times last summer. Such efforts coalesced in projects like New York City’s COVID-19 Working Group, which brought together several prominent local AIDS organizations and worked to ensure a robust, community-oriented response to the coronavirus pandemic.
The results of the Census Bureau survey are made more concerning by the fact that vaccines only slightly reduce the risk of long COVID, and that the virus’s most contagious subvariant, BA.5, continues to spread. “Even with these numbers being as striking as they are, it's only going to get worse,” says Lisa McCorkell, the co-founder of Patient-Led Research Collaborative, a group of people with long COVID who are also leading scientific efforts to study the illness. “My hope is that it wakes people up a bit and makes or encourages people to realize that we're not in a post-pandemic world by any means.”
Forrest, who requested to have their last name withheld to maintain anonymity, is a 36-year-old trans person living with long COVID in New York City who believes that there needs to be better public education about the chronic illness. “I think [people] are really missing the point,” they told me. “[Long COVID] isn’t real to people until it happens to them.”
Before they became sick, Forrest worked 70 hour weeks as an electrician, went snowboarding in Vermont in their free time, rode their bike across the city, and carried large bags of cat litter up to their fourth story walk up. Now, despite being able to continue full-time work, they become winded after most physical activity and are sometimes unable to leave their house or bed. “Weekends are just for sleeping,” they told me. Severe crashes like these after physical or mental activity are a common long COVID symptom known as post exertional malaise, also called post exertional symptom exacerbation. It can manifest as headaches, dizziness, sore throats, sleep issues, fatigue, and more, and symptoms can last for weeks or longer.
Despite the fact that long COVID and its symptoms affect millions in the U.S., there have not been any initiatives to financially support patients, many of whom are no longer able to work. Jessica Olson, a 45-year old bisexual person living with type 1 diabetes and long COVID in Chicago, feels that the government has not put up enough money to care for people with the chronic illness. “The government needs to be spending 1000 times as much as it is to provide care for people with long COVID," she says. The Department of Health and Human Services has acknowledged that long COVID could result in up to a $50 billion annual loss in salary for those affected. Without a safety net, some long COVID patients in the U.S. have become unhoused, while others have committed suicide. In Canada, one long COVID patient has begun the process for medical assistance in dying because of a lack of substantive financial support.
Currently, there are no cures for long COVID, though there are theories that may help target future research, including evidence of microclots, viral persistence, and autoimmune responses caused by the initial infection. Daria Oller, the co-founder of Long COVID Physio, a patient-led association of physical therapists living with the diagnosis, says that the most important thing patients can do after acute infection is rest, and if they develop long COVID, balance activities with rest to avoid symptom exacerbation.
Ultimately, despite the groundbreaking research of many scientists and the observations of activists and advocates, there has been a sluggish response from the U.S. government to treat long COVID with the same urgency as they developed vaccines. #MEAction, which advocates for people living with ME and their caregivers, has also called upon the Biden administration to incorporate feedback from people most affected by chronic illness when making plans to address it. “The government’s forthcoming action plan must make a complete break with the decades-long pattern of neglect and marginalization of the ‘millions missing’ who are living with complex chronic illness,” the organization’s U.S. advocacy director Ben HsuBorger said in a statement.
Similarly, Davids urges that there is no time to waste when it comes to taking action in regards to long COVID. “[The Census Bureau survey results] should be the launching point for more in-depth study,” Davids says. He advocates for immediate funding for LGBTQ+ health clinics to ramp up their services for long COVID, place more trans and queer workers in long COVID clinics, and conduct more research into how HIV is affecting long COVID patients, since HIV disproportionately affects many LGBTQ+ people, especially Black transgender women.
“Allowing COVID to proliferate is going to continue to worsen health disparities,” Davids said, “Particularly in a country where in some places, it's literally illegal to give appropriate health care to trans people.”
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