Long COVID: Patients fight to be believed

In the past 18 months, the answer Marta Esperti has heard from doctors most often is: "You will have to wait it out."

But she felt waiting was not an option when her flare-ups of fever, vomiting, fatigue, tachycardia, memory loss and a dangerously low oxygen saturation persisted more than a year after her COVID-19 infection. A PhD student who loved to travel and work out, Esperti can now run out of breath while cooking lunch.

After visiting countless specialists in France and her native Italy, and paying many medical expenses out of pocket, she finally got her diagnosis: Long COVID. And exams show significant damage to her heart and lungs.

"I feel rage. For one year, I was not taken seriously," she said to DW. "Maybe if someone had listened, I would have had a chance to recover."

What is long COVID?

Esperti is one of millions of long-haulers who continue to experience effects weeks or even months after an acute COVID infection. These symptoms can range from fatigue to brain fog to shortness of breath. 

About 15% of COVID patients still have several symptoms after 12 weeks,according to a study conducted by researchers at Imperial College London in the UK. Women and older patients are more likely to be affected, but men and children also experience it.

Scientists are still researching possible causes, which makes the condition more difficult to diagnose and treat. For many long-haulers, a trip to the doctor’s office becomes a battle to be believed.

'I feel defeated'

That is the case for Alexandra Farrington, who was told her symptoms were in her head just this week. 

The American working with data and business consulting in Porto, Portugal, still experiences chest pain, shortness of breath and fatigue long after her COVID infection in March 2020. 

Medical staff tend to be supportive until they are stumped because they can’t find a diagnosis, she told DW. One cardiologist told her never to come back to his department.

"I feel defeated. Sometimes I feel like I’m armed with more information than the doctor," said Farrington, who tries to keep up with the latest findings on long COVID. 

In Hastings, England, American artist Tiffany McGinnis says she also didn’t feel supported when she experienced recurring bouts of pneumonia and chest pain after her infection. Her symptoms eventually subsided after 14 months.

"Most doctors treated us early sufferers like we were hysterical hypochondriacs," McGinnis said. 

Symptoms have been dismissed historically

Akiko Iwasaki, an immunologist at Yale University, is one of the researchers studying what causes long COVID as well as other post-infection syndromes, so doctors can better treat patients.

In the past, other syndromes have resulted in some of the same problems long-haulers are experiencing: extreme fatigue, pain, problems concentrating.

"Historically, there has definitely been dismissal of these symptoms," she said. "Very little science has been done despite the severe impact that this condition has on people."

Now many long COVID patients are experiencing the same dismissal. With the emergence of the new coronavirus, there are suddenly millions of people whose sheer breadth of complaints, from neurological to cardiological, has baffled doctors.

"If so many systems are involved, a specialist doesn't know how to handle all that," said Iwasaki. "We need to change that."

Some countries are amping up their research: US Congress approved more than $1 billion for the National Institutes of Health to study the long-term consequences of COVID infections. The UK government has invested nearly 20 million pounds ($27.54 million) into a range of studies. 

Around the world, long COVID clinics are giving specialized care to patients experiencing lingering symptoms.

But many long-haulers still don’t have access to this type of treatment. And the lucky ones who do can still be met with disbelief in other circles.

Skeptical relatives

For Amy Pelicano, a director of development in Cincinnati, USA, most of the skepticism comes from her own family. 

Before she caught COVID in the early days of the pandemic, she loved doing cartwheels with her granddaughters. 

More than a year later, she still has a nagging cough that can keep her from talking. She also has brain fog and an elevated heart rate — a clear case of long COVID, according to specialists. These specialists have supported her greatly, she says. 

But many of her relatives have implied that she is just being lazy, making her question herself. 

"On top of feeling bad physically, I feel worse emotionally because I don't really have that solid support from my family, except for my husband," said Pelicano, who has sought out a therapist. 

In London, UK, Yas had to do some convincing before being taken seriously as well. 

The student, who uses they/them pronouns, now uses crutches or a wheelchair to move around because of the severity of the post-COVID fatigue. 

At first, people thought Yas, who only wanted to be referred to by first name, was exaggerating, especially because their father has a milder case of long COVID and is able to do more. But their family and doctor have since started supporting them.

"It was very frustrating because I always tried my best, so it never felt enough. Since people started believing me, my mental health has improved so much," Yas told DW.

Fighting for more awareness

After spending months justifying themselves to doctors and loved ones, many long-haulers have found solace in each other. 

In online support groups, where they share experiences and resources, patients are not only believed but also understood.

"It really made me feel validated, and is one of the main reasons I keep pushing through," said Farrington.

Back in Rome, Esperti has become an advocate herself. She founded Long COVID Italia, a group uniting patients, researchers and doctors fighting for more awareness around the disease. 

Because as long as long COVID isn’t a public health priority, she says, too many people will have to invest their own time, savings and energy into simply being believed.

"We need governments to step up and provide care, rehabilitation and financial support," Esperti said. "Because I’ve lost 18 months of my life."