The Backstory: Long COVID causes fatigue, pain. Here's what long-haulers want you to know.
I'm USA TODAY editor-in-chief Nicole Carroll, and this is The Backstory, insights into our biggest stories of the week. If you'd like to get The Backstory in your inbox every week, sign up here.
There are more than 200 symptoms of long COVID-19, including fatigue, brain fog, breathlessness, headaches, all-over body pain, and gastrointestinal and heart problems.
As many as 12 million people have experienced "long-haul" symptoms, a group often overlooked when attention focuses on deaths (1 out of every 500 people in the U.S. has died of COVID-19) and vaccine hesitancy (only 63% of Americans 12 and older are fully vaccinated).
Most with long COVID-19 feel better after about three months. Still more recover around six months. But there are some people who have been suffering for a year or more.
“On a daily basis, I feel alone and I feel like no one cares,” Ronald Rushing Sr., who has been dealing with COVID-19 since July 2020, told USA TODAY health writer Karen Weintraub.
Rushing came down with a sore throat, cough and a headache July 27. The grocery store manager from Southern Pines, North Carolina, thought it was a cold. His boss sent him home to get better.
The father of six hasn't been back to work since. He said pain shoots through his head from the moment he opens his eyes in the morning until he closes them at night.
He told Weintraub he hopes telling his story will help others feel less isolated and restore his sense of purpose. “It’s become the majority of my life, because I’ve lost everything else.”
We want to help people understand long-haulers as well. All this week, USA TODAY shared stories of their grit, their desperation, their hope for relief.
"People with long COVID want others to know that their problems are real, they’re not making it up and they deserve help," Weintraub said.
"The degree of suffering and its duration was extremely disturbing. Also the lack of information about a condition affecting so many people."
Weintraub and Kristen Jordan Shamus of the Detroit Free Press also told the stories of kids and long COVID-19.
The 7-year-old who lost his memory and ability to walk and talk. The 14-year-old dealing with anxiety and asthma. The 13-year-old who collapsed on the soccer field. He just couldn't get enough air.
"Recovery for most kids infected with the virus is swift and the illness is mild," Weintraub and Shamus wrote. "But about 2% to 3% ... struggle with an array of puzzling and sometimes crippling symptoms that stretch on for weeks or months with no explanation and no clear end date."
Daniel Munblit, an expert in the pediatric immune system at Imperial College London who is researching long-haul COVID-19, helped lead a study in Russia that found a quarter of children hospitalized for COVID-19 continued to have symptoms six to eight months after they were sent home. Most recovered.
“We should not exaggerate the problem,” Munblit told our team, but “at the same time, we should not downplay and say that none are getting it.”
More research is needed, he said.
“We’re talking about potential consequences that may affect these children for decades. Even if it’s a tiny proportion of children, it’s very much worth investigating.”
Journalists from 11 USA TODAY Network newsrooms collaborated on this reporting. Most were surprised at how prevalent long COVID-19 appears to be, and how so many feel abandoned.
"For many people even a mild COVID infection could mean months or years of ensuing health challenges," said Indianapolis Star health reporter Shari Rudavsky.
Health care providers are trying to help by creating multidisciplinary clinics that connect patients with a range of experts, Rudavsky and Arizona Republic health writer Stephanie Innes reported this week. "They work together to devise a plan, operating without a playbook because treatment guidelines have yet to be written."
Demand already exceeds supply at many clinics, according to Dr. Peter Staats, who serves on the medical advisory board for Survivor Corps.
“This is a huge and tremendous problem,” said Staats, a pain specialist and president of the Institute of World Pain. “This is going to be a wave of health care problems that we have not seen the likes of before.”
So what do COVID long-haulers want you to know? This is what they told our reporters.
They are worried about their future: “Literally each day I worked, I had that moment in my head … : ‘Am I going to make it through the day or not?’ ” said long-hauler Adam Bodony, 36, a musician from Westfield, Indiana. “After the day of work, I basically would have to just lay still for hours.”
“I kind of oscillate between ‘This is going to resolve and I will go back to having what I thought was a normal life before,’ with ‘I may just have a constant headache or neck pain or burning pain for the rest of my life and I will just have to deal with it.’ ”
They want a doctor who will listen: Andrew Stott, 31, a software development engineer and single father, tested positive for the coronavirus just before Thanksgiving and was sick for about 10 days. He struggled to breathe, his heart raced and he had body aches.
He spent three months on the wait list for the University of Utah COVID-19 Long Hauler Clinic. Once seen, providers gave him a treatment plan and followed up with a phone call.
“That was the biggest thing in the world. … Having a doctor that validated me and actually followed up with me after an appointment – wow,” he said.
Long COVID-19 destroys more than just health. The medical bills and lost paychecks are crushing people financially. David Robinson, who covers health care in New York for the USA TODAY Network, spoke with Ronald Gaca, a 59-year-old New Yorker who first got COVID-19 in March 2020. His chronic fatigue and breathing struggles have kept him mostly homebound; hand tremors can last hours.
His $800 a week unemployment benefits just expired. “I’ve been doing construction and pouring concrete since I graduated from high school, and I don’t know anything about computers,” said Gaca, who lives in the Rust Belt town of Lancaster, just east of Buffalo.
“I don’t know if I’ll be able to do anything else and it’s kind of scary.”
Long-haulers are not being dramatic. "I think a chief frustration among people with long-haul COVID-19 is getting others to understand that it exists," said TC (Treasure Coast) Palm health reporter Lindsey Leake.
Middle school English teacher Chimére Smith, 39, of Baltimore, sought help for the breathlessness, fever and vision loss due to her initial infection in March 2020. But her symptoms were dismissed as merely acid reflux and dry eye.
“This is all in your head,” she said she was told. “It made me sicker. I was humiliated. I was ashamed.”
This summer, a doctor finally agreed she was presumed to have had COVID-19 – 15 months after her initial infection.
And that's what long haulers want most of all, to be seen and heard, said USA TODAY heath editor Jennifer Portman.
"They aren’t faking or being weak; there are real lasting consequences to this new disease. I hope this project has made them visible and given them a voice."
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Nicole Carroll is the editor-in-chief of USA TODAY. Reach her at EIC@usatoday.com or follow her on Twitter here. Thank you for supporting our journalism. You can subscribe here.