By Allison Bond, STAT, Apr 21, 2021.
Summary: COVID long haulers are struggling hard to receive the medical care for their symptoms and being dismissed.
Last summer, in the six weeks after she began feeling terrifyingly breathless and was briefly hospitalized for Covid-19, Crystal Williams returned to the emergency room eight times. Each visit was for dizziness and shortness of breath, for which she often received fluids and oxygen. She didn’t get any answers as to why her symptoms had persisted, though, and despite having insurance, she ran up tens of thousands of dollars worth of medical bills.
“At first, doctors listened, but they became dismissive the longer things went on,” said Williams, 30, a Tacoma, Wash., cosmetologist. “For months, I could barely walk down the hall to the bathroom without getting winded.”
By September, her breathing problems had begun to wane, but Williams was plagued by a host of other symptoms, including chest pain, severe headaches, dizziness, exhaustion, and brain fog. She had difficulty focusing on a task and remembering things that were once easily filed away, and her heart raced with even minor movements. She eventually learned that this constellation of problems had a name: long Covid.
After many months, Williams discovered through a Facebook group for people with long Covid that specialists such as a cardiologist and a sleep doctor might be able to help her. Although it took two months to book these appointments, and another month to undergo tests that were recommended, Williams was finally able to start to get her concerns addressed — seven months after her symptoms had begun.
Williams is just one of thousands of people with long Covid who have struggled to receive medical care for their symptoms. Many have found that even if they’re able to see a doctor, it can be difficult to be heard, and the best treatments remain unclear.
Medical centers across the country are opening clinics specifically for people with lingering Covid symptoms, aiming to harness the expertise of specialists ranging from pulmonologists to physical therapists to neurologists. But many long Covid sufferers are located far from such a clinic, and the waitlist to be seen often is long. For example, the Cleveland Clinic’s post-Covid recovery center, reCOVer clinic, welcomed 113 patients in its first month, and as of mid-March, the clinic’s next available appointments were at the end of July. Penn Medicine’s Post-Covid Assessment and Recovery Clinic in Philadelphia has enrolled 458, with a three-month waitlist for new patients.
According to recent research, fatigue, shortness of breath, and headaches are among the most common symptoms of long Covid, along with digestive issues and ongoing fevers. It’s not known how many people have the condition, which is also known as post-acute sequelae of SARS-CoV-2 infection or long-haul Covid, but the United Kingdom’s Office for National Statistics estimates 1 in 10 people with a symptomatic Covid infection feel sick for at least 12 weeks. A study published in February found that nearly one-third of people reported persistent symptoms at least three months after an initial Covid infection – most commonly fatigue and lack of taste or smell.
Notably, two-thirds of patients seen in Cleveland Clinic’s long Covid center had not required hospitalization for their infection, indicating that those with milder infections can develop the syndrome.
Lizzie Elliott, a 19-year-old student at Ursinus College in Pennsylvania, said when she developed exhaustion, a racing heart rate, and trouble breathing after a Covid infection in February 2020, connecting with doctors who truly listened was a major challenge. The impact of these symptoms was clear: What used to be a five-minute walk to the dining hall took 10 minutes, and her previously easy mile-long stroll to work had become impossible.
A cardiologist Elliott saw for her racing heartbeat, however, dismissed the symptom as anxiety. Doctors attributed her breathing problems to her asthma, despite the fact they felt quite different from her asthma flares. And a physical therapist did not seem to grasp how even the gentlest physical activity left Elliott exhausted and gasping.
“No one was listening to me,” said Elliott, who eventually found a primary care physician receptive to her concerns and was ultimately able to enroll in Penn Medicine’s post-Covid clinic.
Although the clinic has been helpful, the onus remains on the Elliotts “to seek out skilled diagnosticians willing to seek out the latest research and educate themselves on how to develop treatment plans for patients like Lizzie,” said Jennifer Elliott, Lizzie’s mother.
“It really still comes down to doctors being willing to listen to patients and caregivers, as they are experts in living with their condition,” she said. When that falls into place, however, it can be a breakthrough.
The Elliotts were able to find, for example, “a stunningly skilled physical therapist who listens to Lizzie describe how she is feeling based on activities he prescribes, and responds or pivots accordingly,” said Jennifer Elliott.
The duration of long Covid symptoms is variable, and it’s not known which treatments might be best, although researchers are on the case: In December, Congress granted the National Institutes of Health $1.15 billion to study the longer-term health consequences of Covid-19.
Kristin Englund, an infectious diseases physician who runs Cleveland Clinic’s long Covid clinic, said she hopes clinics like hers can connect patients with experts who are up to date on symptoms and treatments that may help.
“There’s a tremendous amount of need out there, unfortunately,” said Englund, “and we are trying to ramp up quickly to be of help to people.”
The financial fallout
In late 2020, just as Williams was beginning to feel a bit better, her financial situation took a turn for the worse. As a cosmetologist whose business had been shuttered during the pandemic — first temporarily, then permanently — she’d been getting by on unemployment benefits and federal stimulus checks.
“Initially, I thought I was going to go back to work,” said Williams, who is a single mother to her 9-year-old son. “Then I realized I couldn’t even walk to my bathroom. There was no way I could do hair.” She began to fall further and further behind on her bills.
Losing her job also left her without insurance just when she needed it most. Since then, she’s purchased coverage through the state of Washington but still faces hefty copayments. She’s prioritizing buying the medicines that have helped so far because she knows if she stops taking them, she may feel worse. The psychological and financial stress of accruing debt has taken a toll.
“I have to pick which bills I can pay,” she said, and the costs keep accruing. “I am scared to find out how much I owe from all of this.”
And that doesn’t leave much cash for anything else — for herself or her son. “Thank goodness rental assistance came through this winter, or we wouldn’t have had a Christmas,” she said.
Bruce Wheeler, a retired retail banker, also has struggled with debilitating fatigue and headaches since catching Covid in mid-March 2020.
“I can get up at 8 a.m., and at 9:30 a.m. be ready for a nap, and then need another nap in the afternoon,” said Wheeler. “I also used to get piercing headaches every day, as if there was a knife cutting into my temples; it would just stop me in my tracks.” The headaches have improved, he said, but the fatigue has lingered.
Williams, too, continues to struggle with exhaustion. She dedicates an entire day to attending a doctor’s appointment, for example, because taking a shower and getting dressed is so exhausting she needs to nap for a few hours afterwards before heading out the door.
The path ahead
As clinicians and scientists learn more about long Covid, there’s hope that therapies will emerge to help. Until then, people with long Covid emphasized the importance of leaning on a support system and of not being afraid to speak up.
“Do your best to advocate for yourself, don’t let doctors put words in your mouth, and take as much help as you can get,” said Williams, who lives in the same apartment building as her mother and sister. Without them, she said, she would be lost.
Garrett, too, has been sustained by the dedication of her family as well as drop-off deliveries of soup and baked goods from friends and others in her extended community.
“I have a very supportive husband who is basically doing everything,” she said. “I can’t imagine what I would have done if I didn’t have someone to rely on.”
Wheeler found it helpful to connect with a support group of others grappling with long Covid. “To find six other people going through the same thing I was, showing I wasn’t alone, and that this wasn’t psychosomatic — this has been a really big part of my recovery and emotional well-being so far.”
Williams also tries to share her story wherever she can in the hopes of fostering greater understanding of what it’s like to have long Covid. If people can glimpse a day in the life of someone with the condition, she hopes, it might persuade them to take measures to prevent catching the virus in the first place.
“I try to share what I am going through,” she said, “because people just don’t understand what it’s like.”