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

• 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.

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."

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."

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."

'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.

Dit artikel is oorspronkelijk verschenen op z24.nl