In late 2022, Erin, a 43-year-old from Pennsylvania, agreed to spend six weeks in a psychiatric ward, getting intensive treatment for an illness she knew she didn’t have.
That decision was a last resort for Erin, who asked to be identified only by her first name for privacy. Her health had deteriorated after she caught COVID-19 nearly a year earlier; the virus left her with pain, fatigue, rapid weight loss, digestive problems, and vertigo. After another bout with a virus months later, Erin only got sicker, developing heart palpitations, muscle spasms, hoarseness, and pain in her neck, throat, and chest.
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Erin was no stranger to chronic illness, having coped with a connective-tissue disorder her whole life. This was different. She became unable to work and rarely left her home. Her usual doctors were stumped; others said her litany of symptoms could be manifestations of anxiety.
When it became too painful to eat and swallow, Erin grew severely malnourished and was hospitalized at a large academic medical center. “I felt at the time like this was my last hope,” says Erin, who has since been diagnosed with Long COVID. “If I didn’t get any answers there, I didn’t know where to go afterward.”
Once again, however, she was disappointed. The only physical diagnosis her doctors landed on was vocal-cord dysfunction, which Erin felt did not explain her wide range of symptoms. When her doctors began to discuss discharging her, Erin panicked and said she could not manage her excruciating symptoms at home—a sentiment that she says contributed to concerns of self-harm among her doctors and kicked off conversations about a stay in the psychiatric ward. Eventually, seeing no other way forward, Erin agreed to go. “I just got increasingly defeated over time,” she says. “I didn’t know what to do.”
She was admitted for a six-week stay and given diagnoses she knew were wrong: an eating disorder and anxiety.
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The vast majority of Long COVID patients will not land in psychiatric wards, but Erin is far from the only one who has. “Emergency rooms are dangerous places for people with Long COVID,” says David Putrino, who studies and treats the condition as director of rehabilitation innovation for the Mount Sinai Health System in New York.
Numerous patients, he says, are told that inpatient mental-health care is their best or only option. He has worked with at least five patients who were ultimately admitted—and says some of his patients’ stories sound a lot like Erin’s. “Imagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you’re told, ‘Hey, good news, everything is normal and we’re sending you home,’” Putrino says. “Going home doesn’t sound like a survivable outcome. So at that point you might break down…and often that gets reinterpreted as ‘Let’s put this person on a psych hold.’”
Such experiences fit into a long, troubling tradition in medicine. Because there often aren’t conclusive tests for these types of complex chronic conditions, and because many patients do not outwardly appear unwell, they’re frequently told that they aren’t physically sick at all—that symptoms are all in their heads. “Mainstream medicine really isn’t geared toward treating conditions and diseases that it cannot see under a microscope,” says Larry Au, an assistant professor of sociology at the City College of New York who has studied one of the consequences of that disconnect: medical gaslighting of Long COVID patients.
The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness. And it’s not just COVID-19; many diseases, from Lyme to mono to the flu, can lead to mysterious, lingering symptoms that are often ruinous but difficult to explain.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), for example, can follow a variety of viral or bacterial infections, leading to cognitive problems and extreme fatigue made worse by physical or mental exertion. (There is so much overlap between the symptoms of Long COVID and ME/CFS that many people now meet diagnostic criteria for both.) Today, the U.S. Centers for Disease Control and Prevention (CDC) calls ME/CFS a “serious, debilitating” biological illness—but for decades, it was written off as psychosomatic. A 1988 paper by researchers from the U.S. National Institutes of Health (NIH) suggested that it could be related to “unachievable ambition” and “poor coping skills.” And in 1996, a CDC researcher told a journalist that the condition has no viral cause, results in no immune abnormalities, and could be summed up as “hysteria.”
Because the disease was for so long dismissed as psychological, many clinicians to this day try treatments like cognitive behavioral therapy that, at best, do nothing to address the condition’s physical symptoms—and, at worst, exacerbate them. Elizabeth Knights, who is 40 and lives in Massachusetts, went through even more intensive mental-health treatment. She spent several weeks in a psychiatric ward in 2006 before finally being diagnosed with ME/CFS and finding care that dramatically improved her health.
During her senior year of high school, Knights caught a mono-like illness that never fully went away. Once at the top of her academic class and an avid skier and rock climber, Knights eventually had to withdraw from college and move in with her parents because she couldn’t function under the strain of persistent fatigue, flulike symptoms, and cognitive dysfunction—all of which her doctors chalked up to depression.
“I kept insisting, ‘There’s something else going on here,’” Knights remembers. But she didn’t know about ME/CFS at that time, and her doctors were adamant that her problems were psychological. So when physicians recommended she try inpatient psychiatric care, she went along with it. “That was the only path that was presented to me,” Knights remembers, and she took it.
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The experience made things worse. She was given numerous medications to which she had bad reactions and went through electroconvulsive therapy, which she says damaged her memory to the point that she had to relearn how to talk and navigate her hometown. “Nobody was listening to me, and people were not informed enough to make a correct diagnosis,” she says. “I was being misdiagnosed and treated for something that I didn’t have.”
Rivka Solomon, a longtime ME/CFS patient advocate, says she hears this story a couple times a year: a patient, like Knights, has been wrongly admitted to or threatened with inpatient psychiatric care. And those are just the instances she learns about. “I worry about who is, right now, lying in a bed in a psych ward, too sick to function, left with no one to properly care for them, left with no one to advocate for them,” she says.
The problem is larger than individual doctors, says Mount Sinai’s Putrino. People with conditions like Long COVID and ME/CFS may benefit from inpatient rehabilitative care, for example—but if they don’t meet admission criteria set by hospitals, state regulatory boards, or insurance plans, even well-meaning clinicians may be stuck. Sometimes, “there’s no administrative way to admit these people,” Putrino says. A psychiatric diagnosis is, in some cases, the simplest way to get a patient in.
Another complicating factor: there is no validated medical test for detecting Long COVID, ME/CFS, or similar conditions like chronic Lyme disease, another post-infection illness that remains controversial. Although studies have identified biological signs of these illnesses, researchers have not yet found clear biomarkers that lead to definitive diagnoses. “The medical profession loves cold, hard diagnostic tools and evidence-based medicine. They want randomized controlled trials and an easy test that tells you yes or no,” says Dr. Monica Verduzco-Gutierrez, who runs a Long COVID clinic and is chair of physical medicine and rehabilitation at the University of Texas Health Science Center at San Antonio. When those tools aren’t available, clinicians sometimes deem patients’ symptoms psychological.
Ruth, a 32-year-old who asked to use only her first name for privacy, recently had that experience, even though she is a mental-health professional herself and already knew she had Long COVID. One morning in 2024, she woke up in pain, struggling to breathe and unable to control her bladder. When she visited an emergency room, hoping for medication that might help, she says she was told by a doctor that she was experiencing anxiety. “I was like, ‘I am fading away here. I am slowly dying. I need help,’” she says. But despite her repeated requests for care and her own psychological training, she says she was turned away.
These dismissals can also be damaging, Solomon says. “The extreme examples of patients being admitted to psych hospitals are just the tragic tip of the iceberg,” she says. Patients who aren’t believed may struggle to get any medical care at all, or get pushed toward therapies that don’t work. They may also face an uphill battle when trying to secure insurance coverage for treatments, disability benefits, or workplace accommodations.
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Without the backing of a doctor or diagnosis, patients often find that other people in their lives don’t believe them, either. Doug Gross, chair of the department of physical therapy at the University of Alberta, has studied how hard it is for Long COVID patients to find medical care. He says patients often talk about “disbelief from not only the health care system…but more broadly in their social sphere: family members, employers, supervisors at work.”
Psychiatric care is not always inappropriate for patients with Long COVID or similar conditions, Verduzco-Gutierrez says. Some do develop depression, anxiety, and other mental-health symptoms, potentially including severe neuropsychiatric complications related to inflammation in their brains or other physiological issues, Putrino says. “Some folks can really benefit from skilled psychological care, even if it’s not their primary or underlying, driving cause of their illness,” he says.
Some clinicians, however, fail to differentiate between side effects and root causes, or use screening techniques that aren’t well suited for people with chronic conditions, Verduzco-Gutierrez says. For example, asking someone whether they struggle to get out of bed in the morning—a common question when screening for depression—isn’t all that useful if the clinician doesn’t differentiate between physical and mental exhaustion. “The only way to solve this is more education,” Putrino says, “so the next generation of clinicians are not looking at these patients and saying, ‘A couple of antidepressants and a day off will fix you.’”
Katiana Mekka, a 26-year-old Long COVID patient from Greece, says education is especially needed outside the U.S. Last fall, she says, she was involuntarily committed to a psychiatric ward and held for three days, until she passed a thorough screening test for mental-health disorders. The ordeal worsened her already severe illness, leaving her virtually unable to eat, move, or talk for days after.
“These illnesses are so mistreated and misdiagnosed,” Mekka says, adding that so few doctors in Greece know about Long COVID that she has been forced to seek virtual support from specialists in other countries. “The patients that I know, we all have so much will to live and so many dreams. This is not a mental issue. We have severe symptoms.”
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There are signs that the medical community might be getting better at treating people with Long COVID and diseases like it. The sheer volume of Long COVID patients who have emerged in the wake of the pandemic—nearly 20% of U.S. adults have experienced symptoms at some point—has forced a reckoning with the medical system’s history and sparked new research interest in these conditions. The federal government now has an office dedicated to Long COVID research, and the NIH earmarked an estimated $110 million for Long COVID research in 2024. (Federal research funding for ME/CFS is still paltry in comparison: an estimated $13 million in 2024.) Solomon says more research on not just Long COVID but all infection-associated illnesses is critical, so scientists can develop reliable tests and effective treatments.
There’s a long way to go. Putrino says he’s been advocating for systemic changes that would make it easier for hospitals to admit patients with complex conditions and for patients to secure reimbursement for in-home care, but progress is slow. Stigma and denial also still persist. And to this day, most U.S. medical schools do not teach trainee doctors about conditions like ME/CFS.
Despite all she’s been through, Erin, the Long COVID patient who spent time in a U.S. mental hospital, considers herself lucky. She found a silver lining to her stay: in the psychiatric ward, she met a clinician—a speech pathologist she saw because of her vocal dysfunction—who knew about Long COVID and referred her to a specialist. She met with that specialist after leaving inpatient care and in 2023 was diagnosed with both Long COVID and ME/CFS. Under proper care, and after plenty of rest, she’s been able to manage her symptoms well enough to return to work and a mostly normal life.
“That took me a long time, but I was lucky and found someone who actually helped,” Erin says. “Some people never figure it out.”
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