I can remember,, at the start of COVID, how people suffering from Long COVID had their symptoms ignored by friends, families, and doctors, but they found support from other "long haulers" on social media.
It's hard to believe that after five years, Long COVID sufferers are still being mistreated like this!
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Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
By Jamie Ducharme, TIME Magazine, January 14, 2025
"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.
"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.
"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.
"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.
"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.”
"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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