Story by\u00a0Jamie Ducharme, MSN<\/p>\n\n\n\n
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\u2019t have.<\/p>\n\n\n\n
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. <\/p>\n\n\n\n
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.<\/p>\n\n\n\n
When it became too painful to eat and swallow, Erin grew severely malnourished and was hospitalized at a large academic medical center. \u201cI felt at the time like this was my last hope,\u201d says Erin, who has since been diagnosed with Long COVID. \u201cIf I didn\u2019t get any answers there, I didn\u2019t know where to go afterward.\u201d<\/p>\n\n\n\n
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\u2014a sentiment that she says contributed to concerns of self-harm<\/a> among her doctors and kicked off conversations about a stay in the psychiatric ward. Eventually, seeing no other way forward, Erin agreed to go. \u201cI just got increasingly defeated over time,\u201d she says. \u201cI didn\u2019t know what to do.\u201d<\/p>\n\n\n\n She was admitted for a six-week stay and given diagnoses she knew were wrong: an eating disorder and anxiety.<\/p>\n\n\n\n The vast majority of Long COVID patients will not land in psychiatric wards, but Erin is far from the only one who has. \u201cEmergency rooms are dangerous places for people with Long COVID,\u201d says David Putrino, who studies and treats the condition as director of rehabilitation innovation for the Mount Sinai Health System in New York.<\/p>\n\n\n\n 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\u2014and says some of his patients\u2019 stories sound a lot like Erin\u2019s. \u201cImagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you\u2019re told, \u2018Hey, good news, everything is normal and we\u2019re sending you home,\u2019\u201d Putrino says. \u201cGoing home doesn\u2019t sound like a survivable outcome. So at that point you might break down…and often that gets reinterpreted as \u2018Let\u2019s put this person on a psych hold.\u2019\u201d<\/p>\n\n\n\n Such experiences fit into a long, troubling tradition in medicine. Because there often aren\u2019t conclusive tests for these types of complex chronic conditions, and because many patients do not outwardly appear unwell, they\u2019re frequently told that they aren\u2019t physically sick at all\u2014that symptoms are all in their heads. \u201cMainstream medicine really isn\u2019t geared toward treating conditions and diseases that it cannot see under a microscope,\u201d 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<\/a>.<\/p>\n\n\n\n The chronic illnesses that make doctors doubt their patients often start after what \u201cshould\u201d be a short-lived sickness. And it\u2019s not just COVID-19<\/a>; many diseases, from Lyme to mono to the flu, can lead to mysterious, lingering symptoms that are often ruinous but difficult to explain.<\/p>\n\n\n\n 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 \u201cserious, debilitating\u201d biological illness\u2014but for decades, it was written off as psychosomatic. A 1988 paper<\/a> by researchers from the U.S. National Institutes of Health (NIH) suggested that it could be related to \u201cunachievable ambition\u201d and \u201cpoor coping skills.\u201d And in 1996, a CDC researcher told a journalist<\/a> that the condition has no viral cause, results in no immune abnormalities, and could be summed up as \u201chysteria.\u201d<\/p>\n\n\n\n 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\u2019s physical symptoms\u2014and, at worst, exacerbate them<\/a>. 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.<\/p>\n\n\n\n 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\u2019t function under the strain of persistent fatigue, flulike symptoms, and cognitive dysfunction\u2014all of which her doctors chalked up to depression.<\/p>\n\n\n\n \u201cI kept insisting, \u2018There\u2019s something else going on here,\u2019\u201d Knights remembers. But she didn\u2019t 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. \u201cThat was the only path that was presented to me,\u201d Knights remembers, and she took it.<\/p>\n\n\n\n Read More<\/strong>: The Relentless Cost of Chronic Diseases<\/a><\/em><\/p>\n\n\n\n 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. \u201cNobody was listening to me, and people were not informed enough to make a correct diagnosis,\u201d she says. \u201cI was being misdiagnosed and treated for something that I didn\u2019t have.\u201d<\/p>\n\n\n\n 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. \u201cI 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,\u201d she says.<\/p>\n\n\n\n Erin\u2019s hospitalization left her with medical trauma that required therapy Lauren Lancaster for TIME\u00a9 Lauren Lancaster for TIME<\/p>\n\n\n\n The problem is larger than individual doctors, says Mount Sinai\u2019s Putrino. People with conditions like Long COVID and ME\/CFS may benefit from inpatient rehabilitative care, for example\u2014but if they don\u2019t meet admission criteria set by hospitals, state regulatory boards, or insurance plans, even well-meaning clinicians may be stuck. Sometimes, \u201cthere\u2019s no administrative way to admit these people,\u201d Putrino says. A psychiatric diagnosis is, in some cases, the simplest way to get a patient in.<\/p>\n\n\n\n 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<\/a> that remains controversial. Although studies have identified biological signs of these illnesses, researchers have not yet found clear biomarkers that lead to definitive diagnoses. \u201cThe 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,\u201d 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\u2019t available, clinicians sometimes deem patients\u2019 symptoms psychological.<\/p>\n\n\n\n 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. \u201cI was like, \u2018I am fading away here. I am slowly dying. I need help,\u2019\u201d she says. But despite her repeated requests for care and her own psychological training, she says she was turned away.<\/p>\n\n\n\n These dismissals can also be damaging, Solomon says. \u201cThe extreme examples of patients being admitted to psych hospitals are just the tragic tip of the iceberg,\u201d she says. Patients who aren\u2019t believed may struggle to get any medical care at all, or get pushed toward therapies that don\u2019t work. They may also face an uphill battle when trying to secure insurance coverage for treatments, disability benefits, or workplace accommodations<\/a>.<\/p>\n\n\n\n Read More<\/strong>: Long Waits, Short Appointments, Huge Bills: U.S. Health Care Is Causing Patient Burnout<\/a><\/em><\/p>\n\n\n\n Without the backing of a doctor or diagnosis, patients often find that other people in their lives don\u2019t believe them, either. Doug Gross, chair of the department of physical therapy at the University of Alberta, has studied how hard it is<\/a> for Long COVID patients to find medical care. He says patients often talk about \u201cdisbelief from not only the health care system…but more broadly in their social sphere: family members, employers, supervisors at work.\u201d<\/p>\n\n\n\n
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