People with long-term COVID-19 experience months or years of excruciating fatigue, mind-numbing brain fog, or a terrifying struggle to catch their breath.

But they may also face skepticism from others, according to a new study, as employers and doctors wonder if they are really sick, friends shun them, and family grows impatient.

Researchers report that about 95% of people living with long-term COVID-19 say they have experienced at least one form of stigma, and three out of four say they are “often” or “always” stigmatized due to of his condition.

“Our findings indicate that long-term COVID is currently more stigmatized than many other long-term conditions such as HIV and depression,” said lead researcher Maria Pandelić, lecturer in public health at Brighton and Sussex Medical School in the UK. “Nearly all people living with long-term COVID-19 who participated in this study experienced some form of stigma associated with the disease.”

According to the US Centers for Disease Control and Prevention, prolonged COVID affects more than 30% of patients hospitalized with COVID-19.

According to Dr. Aaron Glatt, director of infectious diseases at Mount Sinai Hospital in South Nassau, the symptoms of long-term COVID can be discouraging, but also confusingly vague, which may contribute to some skepticism.

“People might say, ‘So I had COVID and I’m not sick.’ Why are you, who recovered from COVID, still sick? I don’t believe it.” Especially when the results are not so specific,” says Glatt. “Someone has a broken arm, it’s pretty obvious. Someone says I’m tired, then everyone around says, okay, I’m tired too.”

To assess whether people with long-term COVID-19 are stigmatized because of their condition, researchers polled more than 1,100 people online.

The majority of participants (888) were from the UK and about half of them had a formal diagnosis of longstanding COVID. Others said doctors suspected they had the syndrome but had not yet been formally diagnosed.

The results showed that almost two out of three (63%) patients with long-term COVID said they were directly discriminated against as a result of their illness.

They even said that people treated them like they lied about the severity of their symptoms, treated them with disrespect and rudeness, or started avoiding them.

“So far, what we see is that stigma seems to be everywhere,” Pandelić said. “People living with long-term COVID are reporting losing friends, getting fired by health care providers and losing their jobs due to illness.”

About 91% said they expected to be stigmatized at some point due to long-term symptoms, and another 86% said they felt a deep sense of shame associated with their condition.

Those with a clinical diagnosis of longstanding COVID-19 were more likely to report something similar than those without a diagnosis: 83% vs 69%.

As a result of this stigma, long-term COVID patients say they are silent about their condition.

About 61% said they are very careful with who they talk to about their condition, and 34% said they regret it.

The results were recently published in the journal PLOS ONE.

According to infectious disease specialist Dr Louis Ostrosky, the stigma that accompanies the long course of COVID is not unique to the UK.

He is Chief of Infectious Diseases at UTHealth Houston and Memorial Hermann Hospital and works at the hospital’s clinic that handles such incidents.

“This is exactly what I regularly hear from my patients,” Ostrosky said. “They feel stigmatized by the label of long-term COVID.”

Unfortunately, doctors also contribute to this because of the way they treat people with depression or chronic fatigue.

“Patients go from doctor to doctor because they don’t believe they have these symptoms,” Ostrosky said.

“They are not familiar with this disease, so they do not know about it and do not know how to diagnose or treat it. Many cases are mistaken for mental illness.”

The stigmatization of COVID-19 patients comes from many other sources, Ostrosky said.

“We have some jobs that constantly require documentation that they are almost incapacitated, as is the case with some of our patients,” Ostrosky said. “We constantly have to justify treatment to insurance companies that dispute the diagnosis.

“Even husbands get upset sometimes because they don’t understand what’s going on,” she continued. “Most husbands are very supportive, but at some point they mistakenly suspect that the patient is pretending to be sick, and then problems arise in the marriage.”

Fatigue is one of the most common long-term symptoms that questions others, though it can be “very profound and disabling,” Ostrosky said.

Another symptom is post-exercise malaise, “when people feel better and participate in some kind of work or activity, and then they feel this deep fatigue for the next two to three days,” he adds.

Many also raise their eyebrows at the “famous” symptom described as “brain fog,” which prevents a person from concentrating or slows down movement.

People with long-term COVID-19 can directly combat this stigma by fully documenting their condition, Glatt says.

Raising public awareness will also help, experts say.

“We desperately need clear messages that long-term COVID exists and can happen to anyone,” Pandelić said. “It is not a disease of the weak or stressed.”