Heidi Ferrer hadn’t slept more than two hours a night for at least a month before her neurology appointment last May. She had uncontrollable Parkinson’s-like tremors in her arms and chest vibrations that made it impossible to sleep — just some of the many symptoms Ferrer, age 48, developed after a mostly asymptomatic coronavirus infection in April 2020.
When Ferrer and her husband, Nick Güthe, showed the neurologist a video of the tremors, the doctor subtly brought up his own struggles with depression, assuming that’s what was at least partly the reason for her symptoms.
“He’s gaslighting me,’” Güthe recalled his tearful wife telling him when the doctor left the room. He tried to comfort Ferrer, who told him she felt she wasn’t going to improve and that she had no path forward.
The next day, Ferrer killed herself, ending a 13-month struggle with long COVID.
“Was that the final straw? It might have been, I don't know,” Güthe told BuzzFeed News. “But I know that he was not believing her.”
Two years into the pandemic and long COVID is still an incredibly misunderstood and underresearched problem. It’s estimated to affect up to 30% of the millions of people who’ve contracted the coronavirus.
Long COVID — when symptoms or new health conditions occur months or longer after the initial infection, even if it was mild — can happen in both adults and children. Symptoms can affect nearly any organ system, including the heart, lungs, kidneys, brain, eyes, or skin, and they can vary widely and include fatigue, headaches, insomnia, heart palpitations, brain fog, muscle pain, and more.
That’s one reason why people with long COVID often feel invalidated, ignored, and dismissed by the medical professionals they so desperately seek answers from. We asked people to share their stories, and not feeling heard is one of the most common themes unveiled across more than 300 responses.
Sydney, 22, was told to “suck it up” by a nurse. A cardiologist told George, 37, that he was “imagining things” after rushing to the hospital two years after his initial infection with what he thought was a heart attack. Doctors told 38-year-old Andrea to “not think illness thoughts” when trying to exercise through her severe fatigue. Then there’s Michele, 48, whose doctor doesn’t believe in long COVID because he himself recovered with no lingering issues.
The healthcare system is failing long COVID patients in other ways too. People said they’ve been bombarded with hefty medical bills, unsuccessful insurance claims, and medications that can, in some cases, worsen their symptoms, as well as rejections from clinics studying long COVID because they’ve been overwhelmed with demand.
“I get that doctors are busy and drained from dealing with the pandemic for over two years,” Lauren Scungio, 30, of Massachusetts, told BuzzFeed News. “But many of the doctors I’ve seen don’t seem to be keeping up with the latest long COVID research.”
In the absence of that knowledge, many doctors are treating symptoms using a piecemeal approach and may not consider those symptoms as due to long COVID, she said.
“At best, I’ve experienced some temporary symptom relief from this approach, but at worst, it’s made things worse for me and may be paving the way for irreversible damage,” Scungio said.
Many people with long COVID feel ignored by doctors
For years, patients, particularly women, people of color, people with chronic illnesses, and those with larger body sizes, have said they are often not taken seriously by medical professionals when talking about their pain or potentially dangerous symptoms. For many, that’s been a similar experience with long COVID.
People with post-COVID symptoms often know more about the issue than their healthcare providers, according to Diana Berrent, founder of Survivor Corps, one of the largest organizations that offer education and resources for COVID patients and connects them to medical experts and research.
“Right now there’s a paucity of information and understanding around long COVID in the medical world,” Berrent told BuzzFeed News. “What understanding there is is on the patients’ side. Patients have become the experts.”
For about three months now, Paige Gillis has been overcome with fatigue, and she only just recently recovered her sense of smell and taste, the losses of which had exacerbated her depression and anxiety after getting COVID in January. But her symptoms aren’t what her doctors focus on. It’s her weight.
“It’s always been a struggle as a plus-size woman with doctors,” said Gillis, 32, who asked that we use her middle name to protect her privacy. “Everything is ‘you need to lose weight,’ or my favorite is when they shove my BMI in my face. I’ve dealt with depression and anxiety for a very long time, and those moments of feeling belittled and unheard, it's crushing.
“It’s like standing there with a knife in my chest and the answer is eat lettuce with every meal,” she said. “I know my body and I know when something isn’t right.”
When asked how often the 200,000 members of the Survivor Corps felt like medical professionals didn’t believe them or weren’t taking their symptoms seriously, Berrent said it’s the one theme shared by “every single” person.
“One of the things that we hear over and over is, ‘Today was an amazing day. My doctor finally believed me,’” she said. “But that’s not a great success story.”
Grant Hamel, 33, of Ohio, went to the emergency room two times in one week in June 2020, months after he presumably had COVID (tests were limited at the time), with a burning sensation in his chest that sometimes felt like an “electric shock.” His doctors chalked it up to anxiety because he was studying for the bar exam.
Then came the sensitivity to spicy foods and a painful tingling sensation in his limbs. Meanwhile, he was experiencing severe panic attacks for the first time, shortness of breath, and headaches that made him feel like he was “going to black out.” Again, it was his anxiety, his doctors told him.
“It made me feel at times like I was losing my grip on reality or that I was going insane,” Hamel said. “Multiple doctors told me I was a hypochondriac. Seeing stories come out about people who have had similar or the exact same symptoms as me was the only thing that kept me from thinking I was going insane.
“I hadn’t cried in years, but I would leave these appointments and sit in my car and cry because it felt hopeless that my symptoms would ever go away or that anyone would ever be able to help me,” he said.
Crystal Perkins, 29, felt the same way when her doctors blamed her pregnancy for her COVID-induced parosmia — a condition that distorts how foods and smells are perceived. For nearly four months, the only foods she could eat were cottage cheese and cream cheese bagels.
Even though it’s been a year since she gave birth, most foods still taste like garbage to her; even pleasant scents like her shampoo and air fresheners are awful, the Kansas resident said.
“The doctor never acknowledged my symptoms, even when I asked at every prenatal appointment. At one point my doctor said, ‘Wow, I sure hope I never get COVID,’” said Perkins, adding that everyone around her made her feel like she was faking her symptoms, which began with a mild infection in February 2021. “I truly felt like no one believed what I was experiencing or that maybe I really was crazy.”
Doctors are overworked and lack of awareness is a problem
Dr. Benjamin Abramoff, director of the Post-COVID Assessment and Recovery Clinic at the University of Pennsylvania Perelman School of Medicine, said part of the challenge with long COVID is that “we’re all kind of learning on the fly, with guidance coming out on a day-to-day basis.” His clinic has about 1,200 patients, with about 15 to 20 new additions each week.
Because there’s still much to learn and there’s no tests that can give clear diagnoses for long COVID, Abramoff said it’s likely clinicians who aren’t really helping patients “want to make sure they aren’t giving bad advice.”
He said this kind of medical dismissal was more common earlier in the pandemic when less was known, according to discussions with his patients, but that “a lot has changed over time as awareness has grown of long COVID.”
In March 2020, Maya Lindemann developed such severe difficulty breathing while on a Zoom call that her coworkers immediately called 911. The healthy 31-year-old had to crawl out of her studio apartment in California just so emergency responders could find her.
“Young people don’t die of COVID. You don’t need to go to the hospital. Clean a drawer or something,” Lindemann recalled medical personnel telling her. (In fact, more than 15,000 people in her age range have died of COVID so far.) She’d had a panic attack, they concluded.
Over months, Lindemann still couldn’t breathe and developed a searing chest pain. Her primary care doctor said her scans were normal, so he couldn’t help her. A pulmonologist told her, “just relax, it’ll go away.”
“It continues to be the responsibility of the medical community to produce resources for primary care clinicians to learn more about this condition because it is so new and so many people do have it,” Abramoff told us. “We need to make sure they have all the resources they need to identify and treat long COVID.”
Not all interactions with healthcare workers have been negative
For two years now, Gillian Lizars, 35, has been dealing with nausea, light and sound sensitivity, tinnitus, cognitive issues, temperature dysregulation, fatigue, and body vibrations and pain after her moderate coronavirus infection in March 2020. Lizars was a healthy and busy New Yorker before long COVID, exercising five to seven days a week.
Now, she said it feels like she has the flu every day, with her latest test showing she utilizes oxygen “similar to an inactive 83-year-old.”
“I know not everyone has a great experience with their doctors, I haven’t either, and my medical team hasn’t always been perfect, but bottom line I know they are trying their hardest with very little resources available,” Lizars said. “I’ve had to research and discover a lot of things on my own and then push for testing. There are too many of us needing help.”
M. King, who prefers her first name to remain private, is more frustrated over the fact that there’s little doctors can do to help her. She went from running 10-mile races without training to a sedentary lifestyle forced upon her by fatigue, GI problems, poor memory, muscle numbness and twitches, shortness of breath, headaches, and depression. She had a mild COVID case in April 2020.
“I can tell my doctors don’t love having to tell me ‘sorry’ and then see me tearing up as I leave their office because I’m just leaving without answers again,” King said, who has especially been struggling with false hope.
“I’m terrified about my future and if these side effects will inevitably lead to something that could kill me later in life,” she said. “I was told these things would go away with time, or after I’ve gotten the vaccine, but neither has happened and I’m tired of getting my hopes up.”
How to find the long COVID help you need
Interacting with a dismissive doctor may leave you feeling like there’s no light at the end of your long COVID journey, but there are steps you can take to ensure you get the medical attention you want and need.
“Patients need to be their own best advocates,” Berrent of Survivor Corps said. “You cannot depend on any doctor to do that for you.”
First, talk with your primary care doctor about what you’re experiencing and don’t shy away from sharing what you’ve learned about online from long COVID communities, Abramoff said. Then try to establish a continual clinical relationship with your medical team, because as is often the case with long COVID, you’ll have varying symptoms that may take more than one appointment to address.
“It can be hard in one quick visit to get to the bottom of all those,” Abramoff said, “and for long COVID, a lot of the treatments tend to be more trial and error when trying to find what works.”
If you feel your clinician isn’t taking you seriously, you can try another office or team of physicians, or you can reach out to a local long COVID clinic. TBH, this may not be the easiest feat. Some locations have waitlists and certain criteria like proof of a positive PCR test.
On the Survivors Corps website, you can find post-COVID care centers in your state, as well as federal resources and research to help you better understand your symptoms.
Joining a support group can also help connect you to others with long COVID to discuss what doctors and treatments are helpful, and seeking care with a mental professional can also help. Berrentt said about 18% of people in Survivors Corps say they’ve experienced suicidal ideation related to long COVID.
In the meantime, experts say you should monitor your progress in case you find you need to take your medical care in a different direction.
It’s what’s been helping 32-year-old Kate Harmon Siberine stay positive. She lost her baby during her bout with COVID-related pneumonia in January and has been dealing with long COVID ever since.
“A friend and fellow long hauler told me that rather than only getting stuck on all the things I can no longer do since getting sick, it’s worth celebrating what I can do this week that I couldn’t do last week,” Siberine told us.
“I found a way to Irish step dance while seated for St. Patrick’s Day,” she said. “Last night, my spouse and I ate pizza and watched the new Spider-Man movie, and life felt a little normal.”
Siberine has also made progress in her respiratory rehabilitation sessions and learned of new leads about her high heart rate and blood pressure. “I continue to be grateful,” she said. “I continue to grieve.”
For Maya Lindemann, it took over a year of tests to receive several diagnoses brought on by long COVID, including conditions and disorders of her heart, blood, and vocal cords.
“As the world eagerly moves on to ‘living with COVID,’ consider for a moment what that means for those of us for whom the destruction of COVID never left our bodies,” Lindemann told BuzzFeed News. “We are stuck in the chasm between the accepted outcomes of death and recovery.” ●
The US National Suicide Prevention Lifeline is 1-800-273-8255. The Trevor Project, which provides help and suicide-prevention resources for LGBTQ youth, is 1-866-488-7386. Find other international suicide helplines at Befrienders Worldwide (befrienders.org).