Long COVID patients say they feel gaslit by doctors that still don’t believe them

A close up picture of Chimére Smith, wearing a red mask, in the background is some medical equipment.
Chimére Smith, a long COVID patient, says she felt gaslit by doctors.

  • Three long COVID patients told Insider they felt gaslit by medical professionals.
  • Because doctors didn’t believe them, the say, the care they got was delayed or didn’t fit their cases.
  • People of color with long COVID may be most likely to face medical gaslighting.
  • See more stories on Insider’s business page.

For some long COVID patients, going to the doctor’s office requires a clear game plan, extensive research, mental resilience, and physical stamina. That’s because they don’t expect their doctors to believe them.

Patients with other diseases that are poorly understood, like chronic fatigue syndrome or fibromyalgia, are familiar with medical gaslighting, a term for situations in which medical professionals undermine or dismiss a patient’s symptoms as being caused by stress or anxiety.

Three long COVID patients told Insider that they have faced the same issues, and that this gaslighting has taken an emotional and physical toll.

“From the first doctor’s appointment where I saw my primary care doctor, up until one of the final hospital visits I had in July last year, it has been a non-stop roller coaster of being gaslit,” Chimére Smith, a long-hauler who says her COVID symptoms lasted almost a year, told Insider. “Especially by doctors who are white and who are male.”

‘A blame-the-victim response to illness’

Smith calls herself a “first-waver” – she got COVID-19 in March 2020.

Estimates suggest that long COVID cases like hers, in which people experience persistent or new symptoms for more than a month, occur in at least one in 10 coronavirus infections. Some research suggests it may be as many as one in three.

Smith, a middle school teacher from Baltimore, said COVID-19 left her with fatigue and on-and-off vision loss in her left eye. She was bed-bound with fibromyalgia, a condition that causes pain all over the body, as well as occipital neuralgia, a type of headache that causes piercing pain to the back of the neck and head. On top of that, brain fog and memory loss have prevented her from returning to work.

But Smith said she still struggles to get doctors to believe her symptoms are real.

“They bypassed my long laundry list of symptoms to try to convince me that what was happening to me was not actually happening to me,” Smith said.

Chimére Smith, a middle school teacher, is in her school in Baltmore, in the background are children.
Chimére Smith, teaching in Baltimore.

The idea of medical gaslighting gained new attention in 2018, after a Vogue article revealed that Serena Williams struggled to convince her doctors that she was having a pulmonary embolism after giving birth to her daughter. It could have cost Williams her life.

Dozens of patients, mostly women, have since come forward to describe gaslighting they’ve experienced. These instances are particularly common among people with syndromes that are poorly understood and under-researched, like polycystic ovarian syndrome and endometriosis.

The same has been true for long COVID during most of the pandemic, although the Centers for Disease Control and Prevention released diagnostic guidelines last week that should help doctors better identify the condition.

Rachel M. Robles, a long COVID patient who works with the patient group Body Politik, told Insider that in the face of “mystery illnesses,” medical professionals often react one of two ways. In the best-case scenario, doctors become “curious and helpful,” she said. They try experimental treatments or refer the patient to a specialist.

“Others become skeptical and do not want to give out any resources to someone who, in their mind, is a hypochondriac,” Robles said.

Harriet Washington, a medical ethicist and author of the book “Medical Apartheid” told Insider the latter approach is “essentially a blame-the-victim response to illness.”

Lisa McCorkell, a long COVID patient, standing in front of a rose bush.
Lisa McCorkell.

Long COVID has the hallmarks of a disease vulnerable to gaslighting

Patients with long COVID present a huge variety of symptoms.

“No patient is like another, the combination of symptoms is so variable,” Fidaa Shaib, a pulmonologist who works in a long COVID clinic at Baylor College of Medicine, told Insider.

“I think physicians try to do their best,” Shaib added, “but there was no unifying structure to put their findings together.”

Some long COVID symptoms, like heart problems, can be measured directly. But many of the most commonly reported symptoms, such as brain fog or memory loss, depend on the patient’s perception.

A lot of our tests are coming back normal. When that happens, I think it’s easiest for doctors to say that it’s in our head or that it’s anxiety,” Lisa McCorkell, a long COVID patient, told Insider. McCorkell leads the Patient-Led Research Collaborative, a long COVID research group.

The fact that statistically, four of every five COVID long-haulers are women doesn’t help.

“There’s still this pervasive belief in the medical community that anytime a woman complains about her health, it’s either related to her hormones or all in her head,” Stephanie Trentacoste McNally, a gynecologist at the Weill Cornell Medical Center in New York, wrote in a blog post.

Reports of pain are more frequently dismissed among women. A 2008 study found that women who went to the emergency room with severe stomach pain had to wait, on average, 33% longer than men with the same symptoms.

The consequences of gaslighting can be physical and financial

Smith and Robles both said their efforts to seek medical treatment were especially difficult because they didn’t initially get tested for COVID-19.

“The biggest population that is having trouble are the folks who don’t have a positive test, or who were unable to be tested, particularly at the beginning of the pandemic,” McCorkell said. “They’re continuing to face gaslighting from doctors, both for their symptoms now and even just being told that they never had COVID-19 to begin with.”

Rachel Robles, wearing a blue tank top, holds up a medal from Popular Brooklyn Half Marathon she ran in 2019. In the background are other runners sitting on the ground.
Rachel Robles, after finishing the Brooklyn Half Marathon in May 2019.

Shaib said that for each patient, she needs about an hour to discuss all the symptoms of long COVID. That’s time some primary care doctors don’t have, she added.

“I really would think it’s better for patients to go right away into a specialty multidisciplinary clinic, rather than going from one physician to another,” Shaib said.

There is no treatment for long COVID, but some symptoms can be managed.

In Robles’ case, she was diagnosed with postural tachycardia syndrome – a condition that affects involuntary nervous-system functions like heartbeat and blood flow – about five months after getting COVID-19. Until then, she said, doctors brushed aside her fatigue, dizziness, and racing heart, suggesting the symptoms were caused by anxiety.

But now her treatment regimen involves increasing her water and salt intake and wearing compression garments. Robles thinks her recovery would have been quicker had she gotten a diagnosis sooner.

“You can’t fix a problem until you identify it,” she said.

McCorkell said that in some cases, recommendations from incredulous doctors can even make long COVID symptoms worse. For example, patients struggling with fatigue might benefit from learning not to go beyond a finite “energy envelope.” But instead, some have been told to exercise and push through their fatigue, according to McCorkell.

“If people pace, they can prevent permanent disability and being bedbound for decades,” she said, but added that pushing too hard “is just disastrous for patients with chronic fatigue syndrome.”

Smith said that one of the biggest challenges of medical gaslighting has been financial.

“We need disability benefits, money, because many of us are struggling to keep things like bills and keeping utilities running. We need employers to understand with compassion that our diagnosis of disability is genuine and real,” she said.

People of color are generally at higher risk of gaslighting

Washington said that although there isn’t yet data to determine whether people of color have had their long COVID symptoms dismissed more than white patients, she wouldn’t be surprised.

“There are many complaints of people who went to the hospital with symptoms of COVID, seeking healthcare and were turned away,” she said, referring to Black Americans in particular. “The symptoms got worse later – when they came back to the hospital, they were extremely ill.”

Washington pointed to the case of Dr. Susan Moore, a Black medical internist who documented on social media the ways in which her COVID-19 symptoms were not being dealt with. Moore later died.

There is a long history of Black Americans’ reports of pain being dismissed, she said.

“They tend to be sent home without treatment and have their pain categorized as drug-seeking,” she said.

Smith, who is Black, said she, too, experienced inequity in her medical treatment.

“I watched doctors tell other patients in the rooms, white patients, that they were presumed positive, and I couldn’t even get that same type of treatment,” she said, adding, “it’s heartbreaking because it’s a constant reminder of how broken the healthcare system is.”

Chimére Smith, a long COVID patient, is testifying at a Congressional Hearing on Long Covid remotely. She's in a roo, with a fairly neutral background.
Chimére Smith testified at a Congressional hearing on long COVID on April 28.

‘Because I have been gaslit, I don’t seek care anymore’

In April, Reps. Don Beyer and Jack Bergman introduced a bill to Congress that would give $100 million to support long COVID patients. About $30 million of that would go to educating health professionals and the public about the syndrome. Beyer told NBC3 News at 7 that he is hopeful that it will become law in the next few months.

But for some patients, it’s too late.

“Personally, because I have been gaslit, I don’t seek care anymore,” McCorkell said, adding that her research has indicated that’s the case for many other long COVID patients.

“Who would want to go back to seek care and be gaslit again? People are not going to be getting the care that they need and will have to be incentivized to return to the doctor for probably decades to come,” she said.

Smith has become a long-COVID patient advocate focussing on Black people in urban communities, and she testified at a Congressional hearing on long COVID in April. But she’s not holding her breath for government funding – she’s applying for grants to turn her church building into a long COVID support center.

“I want to provide those medical resources, those personal consultations, education information, and especially mental health support to Black long COVID patients,” Smith said.

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Fauci sometimes gets 2,000 emails a day – but never deletes them and feels he has a ‘responsibility’ to reply to them all

Anthony Fauci
Dr. Anthony Fauci, the US’s top infectious-disease expert, feels compelled to reply to the thousands of emails that ping through a day.

  • Dr. Fauci said in a WSJ event that he feels compelled to read and reply to his thousands of daily emails.
  • “I get asked a lot of questions that are medical questions [from] people who need help,” Fauci said.
  • “People tell me that, ‘why don’t you just wipe the screen clean?'” he said. “You can’t do that. You just can’t.”
  • See more stories on Insider’s business page.

Dr. Anthony Fauci said on Wednesday that he feels an urge to reply to each of the thousands of emails that fall into his inbox every day.

The director of the National Institute of Allergy and Infectious Disease said in the Wall Street Journal’s online Tech Health event that he feels a “responsibility” to respond to the mountain of emails, per CNBC. He sometimes stays up “late into the night” responding, he said.

“I am the type of person, I get asked a lot of questions that are medical questions [from] people who need help,” Fauci said. “I’ve never been able to lose that feeling of responsibility of when people reach out to you and ask for help that you respond to them. So, I do that, [and] that takes a lot of time.”

Fauci, the US’s top infectious-disease expert, wrote in an email to a friend in March 2020 that he was receiving more than 2,000 emails a day, according to emails obtained by Buzzfeed and The Washington Post.

The emails showed requests for advice, interviews, and keynote speeches.

“I spend a lot of time doing emails and sometimes late into the night,” Fauci said at Journal’s Tech Health event.

“A lot of the emails are people that really do need to get some feedback from you,” Fauci said. He sends most of his emails from his desktop computer, or “my iPhone when I’m moving around,” he said.

The 80-year-old said he feels like he can’t delete his emails because of his role as a medical expert during a global pandemic.

“People tell me that, ‘why don’t you just wipe the screen clean?'” he said. “You can’t do that. You just can’t.”

In one of the emails that Fauci received, a US health official told him that “doggie cones” could be used as personal protective equipment (PPE), per The Post. Fauci replied with a polite thank you.

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How magic shrooms affect your brain

Following is a transcript of the video.

Narrator: This is the map of a typical human brain, and this is the map of a brain on psilocybin, the psychoactive compound in magic mushrooms. All those new connections you can see don’t just make people trip. They’re also the reason that psilocybin is one of today’s most talked-about drugs in certain medical circles. Worldwide, more than 180 species of mushrooms produce psilocybin, likely as a defense strategy. Scientists believe that psilocybin may dampen the appetite of predatory insects like ants so that they feel full long before eating their way through the entire mushroom. Humans, on the other hand, well, they trip.

Johnson: Psilocybin is a so-called classic psychedelic, so it’s in the same category as drugs like LSD and works in the brain in basically the same way.

Narrator: When you take psilocybin, your gut converts it into another chemical, known as psilocin, which binds to serotonin receptors called 2A, and experts think that’s what triggers what they call neuronal avalanching. It’s essentially a domino effect of different changes in the brain. You’ve got increased activity in the visual cortex, which leads to changes in your perception, and then decreased network activity in the default mode network, which leads to a loss of ego.

Johnson: And that may be why people often report at high doses a profound sense of unity, transcending beyond themselves.

Narrator: But perhaps most importantly, psilocybin increases connectivity among different regions of the brain.

Johnson: Because of that receptor activation, there is a profound change in the way that different areas of the brain synchronize with each other.

Narrator: Think of it like an orchestra. Normally, the brain has different musical groups that each play independently.

Johnson: A sextet there, here’s a quartet there. This one’s playing jazz. This one’s classical, and a number of other ones.

Narrator: But once psilocybin enters, it’s like you suddenly have a conductor.

Johnson: So there is this communication between areas that are normally kind of compartmentalized and doing their own thing.

Narrator: Scientists believe that it’s a combination of these effects that make psilocybin so useful for combating depression and addiction. When new areas in the brain start talking to each other, for example, you might have new insights into old problems. And that’s why some experts describe tripping as a condensed version of talk therapy. And then dissolving your ego, Johnson says…

Johnson: Can be profoundly healing.

Narrator: And there’s actually an increasing amount of research to prove it. In two studies published in 2016, researchers gave cancer patients with depression a large dose of psilocybin, and even six months later, at least 80% of them showed significant decreases in depressed mood. And research on addiction is equally promising. In a study led by Johnson, 15 volunteers took psilocybin to quit smoking, and after six months, 80% of them had kicked the habit, compared to a rate of about 35% for the drug varenicline, which is widely considered the best smoking-cessation drug out there. Yet despite these results, psilocybin is still listed as a Schedule I drug, a category reserved for compounds that have no currently accepted medical use and a high potential for abuse. Now, taking magic mushrooms recreationally does come with some risks.

Johnson: So a dramatic example would be driving under the influence of psilocybin or using it in a way that interferes with your job, or your family relations, or your schoolwork, for example.

Narrator: But as far as scientists know, long-term use doesn’t damage the brain in the way that other drugs can, and according to at least one study, it’s actually the safest drug out there. In 2018, for example, just 0.3% of people who reported taking them needed medical emergency treatment, compared to 0.9% for ecstasy and 1.3% for alcohol. Taken altogether, that’s why some states across the country have campaigned to decriminalize psilocybin, including Denver, which, in May of 2019, became the first ever to succeed.

EDITOR’S NOTE: This video was originally published in May 2019.

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Rite Aid plunges 22% after cutting its full-year forecast as the drugstore chain saw fewer people getting colds and coughs

GettyImages 1268610237
  • Shares in Rite Aid fell 22% at the market open on Thursday after the company cut its full-year forecast.
  • A decline in cases related to cough, cold, and flu hurt the drugstore chain’s fourth-quarter sales.
  • Social distancing measures and a long winter impacted its fourth-quarter sales, the chain said.
  • Sign up here for our daily newsletter, 10 Things Before the Opening Bell.

Rite Aid fell by as much as 22% on Thursday after the company said its full-year results would be undermined by declining numbers of people falling sick with colds and coughs.

The retail drugstore industry has been hit by a weak sales season, due to measures to curtail the spread of coronavirus, the company said. As a result of physical distancing, face masks, and use of sanitizers, Rite Aid said it saw a decline of nearly 37% in its cough, cold, and flu-related product categories.

Rite Aid revised its expected full-year earnings before interest, taxes and depreciation to between $425 million and $435 million, from a prior forecast of between $490 and $520 million.

“During the fourth quarter, our industry was impacted by a historically soft cough, cold and flu season, as well as the continued impacts of COVID on the deferral of elective procedures and related acute prescription volume and selling, general and administrative expenses,” president and CEO Heyward Donigan said in a statement.

Front-end same store sales, a key metric that determines how well existing locations are performing, fell 5.6% for the company’s fourth quarter that ended on February 27. The winter season also contributed to a slump in its supply chain and a drop in sales, Rite Aid said.

Rite Aid shares closed at $23.34 per share on Wednesday, but sank 22% to $18.28 per share at Thursday’s market open.

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How anesthesia affects your brain and body

Since 1846, doctors have used a variety of drugs to make patients unconscious for surgery, but even though the medications have changed, there’s one thing that remains the same- it works. But how exactly? We don’t know every detail about what’s going on when we administer anesthesia, but then again, we also don’t know exactly how consciousness works either. Following is a transcript of the video.

Narrator: When you go to sleep, if I pinched you, you’d be up. If I shook you, you’d be up, right? But under anesthesia, I’m gonna pinch you and do a full operation and you’re not up. So it’s really further on the spectrum of unconsciousness.

Narrator: When you wake up after being put under with general anesthesia you barely feel like any time has passed. You could have been out for an hour or a day and you wouldn’t know the difference.

Fong: When you go to a natural sleep, people call your name, your alarm goes off, you wake up, right? This is not what is gonna happen during general anesthesia. You’re gonna be unconscious.

Narrator: You’re closer to being in a coma than being asleep.

Anesthesia was first used during surgery in 1846. The drug provided at that time was ether. Now anesthesiologists more commonly use a combination of drugs like propofol and fentanyl which interrupt neural pathways so you don’t feel pain and you don’t remember the surgery.

Fong: Three things that you need for general anesthesia are you need amnesia so that they don’t remember, analgesia so they have pain relief and then operating conditions for the surgeon. Some surgeries you need the patient to be very relaxed so you would use a muscle relaxant. Other surgeries the patient just needs to be asleep and anesthetized but they don’t need relaxation so how they do that varies upon the different medications that you’re using. Some will depress excitatory neurons and some will enhance inhibitory neurons.

Narrator: Excitatory neurons, for example, get excited and send signals to other neurons to fire. Depressing them means less signals telling your brain you’re in pain. Inhibitory neurons do the opposite. They make it harder for neurons to generate these electrical signals. In either case this means fewer active neurons overall which is important because when your body is being poked and prodded, neurons would typically fire to tell your brain you’re in pain. If those neurons aren’t firing, your brain doesn’t know that your body is, well, being cut open.

Fong: Basically it interrupts the pathways and the communication between your neural networks. We’re aiming for them to be not in pain by looking at their vital signs, their heart rate, their blood pressure. Then we want to make sure that they’re unconscious.

Narrator: Without anesthesia, many important surgeries wouldn’t be possible because they’d be way too traumatic.

Fong: Surgery didn’t move forward, really, until anesthesia moved forward. You know, you watch those old movies. They give you a swig of alcohol, they put a tourniquet and they hack your leg off. People don’t do well with that, right? If you had a bad heart, that would be the end of that.

Narrator: After the procedure is complete the doctors stop administering the meds and the most powerful effects of the drugs wear off but even though you’re conscious again you might continue to experience some of the drugs side effects.

EDITOR’S NOTE: This video was originally published in August 2018.

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Doctors are calling to investigate a prestigious medical journal after it tweeted ‘No physician is racist’

Howard Bauchner, editor-in-chief of The Journal of the American Medical Association, in 2013.
Howard Bauchner, editor-in-chief of The Journal of the American Medical Association, in 2013.

  • Doctors launched a petition against The Journal of American Medical Association.
  • The publication’s editor-in-chief apologized after it tweeted “No physician is racist.”
  • The petition calls for further investigation of the editor-in-chief and editorial staff diversity.
  • Visit the Business section of Insider for more stories.

Doctors are calling to investigate one of the country’s most prestigious medical journals.

The Institute for Antiracism in Medicine, an antiracism group founded by three Black women physicians, launched a petition against The Journal of American Medical Association after the publication tweeted “No physician is racist, so how can there be structural racism in health care?”

JAMA, a peer-reviewed medical journal that dates back to 1883, is the most widely circulated journal in the world, per its website. JAMA’s now deleted tweet promoted a podcast episode where two editors discussed how to talk about racism in medicine.

“Structural racism is an unfortunate term,” JAMA deputy editor Ed Livingston said in the podcast, which has also been deleted, according to The Root. “Personally, I think taking racism out of the conversation will help. Many of us are offended by the concept that we are racist.”

JAMA removed the podcast after Black doctors and other medical experts brought attention to offensive remarks about race in the episode. Editor-in-chief Howard Bauchner released a statement apologizing for the harm caused by the tweet and parts of the podcast.

The petition calls the investigate whether Bauchner failed to diversify editorial staff or discriminated against them. The group is also calling on JAMA to hire a deputy editor dedicated to antiracism and health equity publications, and schedule town halls with Black, Indigenous, and other community members of color.

The petition had more than 1,600 signatures as of Tuesday morning.

Research suggests racial bias in medicine leads to worse patient care for Black people. A 2016 report found half of white medical students and residents in the study endorsed false beliefs about biological differences among Black and white people, which led to making less accurate treatment recommendations for Black patients.

Doctors and nurses tend to not take Black patients’ pain as seriously as white patients. A national study of nearly one million emergency room visits found Black children had one-fifth the chance of receiving opioid painkillers compared to white children, The Washington Post reported.

The result of decades of racial bias in medicine has led to Black people having less trust in the life-saving COVID-19 vaccine.

Medical institutions in the US have taken some responsibility for the industry’s racial bias, prompted by the COVID-19 pandemic’s outsized impact on Black people and the calls for accountability during the 2020 George Floyd protests.

The American Medical Association recently defined racism as a public health threat. In 2018, AMA had apologized for actively discriminating against Black doctors and barring them from joining medical societies between the 1800s to the 1960s.

JAMA has been revising its editorial style for reporting on race and ethnicity over the last eight months.

JAMA and the Institute for Antiracism in Medicine were not immediately available for additional comment.

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Here are Business Insider’s biggest healthcare stories of 2020

Pills 2 (2)

Hello,

Dear readers, somehow, we’ve made it to the final day of 2020. How are you feeling? I’m awash with emotion reflecting on this roller coaster of a year. It’s a year that’s brought so much joy and sorrow – professionally and personally – for so many. 

As we head in to 2021, the healthcare team here at Business Insider is here to guide you through all of the happenings in the industry. But before we do, I wanted to reflect on some of the stories I’m most proud of from our team, which has grown so much since the first week of January when Zach Tracer and I were a team of two blogging away about healthcare.

This year, I’m grateful for smart analysis, reporting that broke news, and – most especially – a team big enough for a few five-reporter bylines. 

Here are some of the stories we’re most proud of from the year – arranged chronologically for a reminder of just how much has transpired in the past year

With that, I hope you all have a Happy New Year! See you in 2021. 

– Lydia

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