Long COVID is a real experience for many people post-infection.
"I felt like my neck was breaking," Ashley Jackson said.
"It felt like gravity was 20 times stronger," John Bolecek said. "Picking up a spoon to eat felt like it was 20 pounds."
"I started doing this thing we affectionately started calling baby giraffe-ing where I would be walking, my legs would just give way out from underneath me," Keri Kae Gebo said.
The World Health Organization defines long COVID as the continuation or development of new symptoms three months after an initial infection, with the vast majority of cases happening after mild early infections.
Long COVID has happened across all the disease's variants, both before and after the introduction of vaccines.
And it's not the same for everyone; cases of it can come with a bunch of symptoms, which often vary by person. Most of the people Scripps News talked to were healthy with no underlying conditions before they got sick, so the side effects some people experienced came as a shock.
"COVID induced diabetes," said Heather-Elizabeth Brown, who is dealing with long COVID. "I wasn't diabetic before I got COVID."
There are several guesses as to why long COVID develops. Mount Sinai School of Medicine and Yale researchers found that having lower levels of the stress hormone cortisol was one of the best predictors of whether someone would have long COVID.
"Older male patients that get COVID tend to develop more severe acute COVID, and now the severe acute COVID can also turn into long COVID," said Akiko Iwasaki, a professor of immunobiology at Yale School of Medicine. "However, people who have milder infections who develop long COVID tend to be women of ages between 30 to 50, but there are obviously children and elderly who are also getting long COVID. So it's not to generalize that only these groups of people get it, but that's sort of the risk factors that we know."
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Long COVID can be hard to detect, with more than 200 symptoms and no universal clinical guidelines. It has medical experts scratching their heads.
It's hard to know exactly how many Americans infected with COVID now have long COVID. The Department of Health and Human Services cites research putting that number anywhere from 5 to 30%.
Researchers have found long COVID may be linked to other conditions like myalgic encephalomyelitis — also known as chronic fatigue syndrome, which can cause extreme exhaustion — and postural orthostatic tachycardia syndrome — also known as POTS, which causes the heartbeat to speed up when standing up. Those are both illnesses that people can develop after other viruses, too.
"I was entirely bed-bound," said Sawyer Blatz, who is living with long COVID. "I started developing what's known as POTS — which maybe I had had since COVID, but I never really realized until I was starting to get more of the severe symptoms with it. But I would stand up and my heart rate would go from 60 to 130."
As research into the condition's causes and symptoms continues, treating it is proving similarly difficult.
So, how are people affording the costs that come with this diagnosis?
"Medical bills itself this year has been in the thousands, multiple thousands," said Kate Winson, who is living with long COVID.
"I would say I'm probably $25,000 so far in debt with all of this," Randy Stahl said.
"Everything together — medications, going to see a therapist, going to see a psychiatrist — those things I know I would say it probably came out to about $70,000 for me," Teresa Akintonwa said.
Sometimes it can be hard for a person to even prove to insurance that they're going through something to get coverage for some of those costs, since test results for long COVID don't always reflect how sick people are.
"Lung scans were coming back relatively clear," said Jessica Lambert, who is living with long COVID. "They did all these tests on my heart, and they're just like, 'We know something is happening. This is beyond what we've ever seen before.'"
"My doctors now are still like, 'You're an anomaly,' because I was presenting with all of these illnesses that weren't showing up in my markers," Jackson said.
"I got my results back, and the results, unfortunately, didn't show anything significant," Akintonwa said.
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The costs go beyond just money. The people Scripps News interviewed feel grief, anger, confusion and loss. They say they have lost jobs, relationships, hobbies and more.
"I could backpack 25 miles a day, day in, day out," Stahl said. "That previous summer, I went backpacking with my friend. We did the Trans-Catalina Trail where we did, like, 40 or 50 miles in two days. I was struggling walking to my mailbox on the street."
"I had moments where I just wondered, like, was it worth it to keep living?" said Haley Hamblin, who is living with long COVID. "Just to not know what my life was going to be like, if it was going to get better — the way I was feeling, I didn't want my life to be like that."
"It got pretty bad," Akintonwa said. "I had to ask my family to kind of take certain things away, you know, certain firearms and so forth out of my reach because I felt like — and I've said this before, but it's funny — you can be afraid to die. I was afraid to sleep. I had extreme insomnia. I wanted to sleep, but I felt like I might stop breathing. You kind of vacillate between, 'I'm afraid to die,' and, 'I'm so sick of this. I want to kill myself.'"
Both of them have seen improvements since those feelings: Hamblin says having a supportive husband has been a huge help, as has having a young daughter who she sees as her reason to get better. Akintonwa, meanwhile, says she usually feels about 90% better but has an occasional rebound in symptoms.
So, what happens when public officials say the pandemic is over, but you're still sick?
Some long COVID patients think the move away from pandemic-related precautions will put cures and treatments out of reach. They told Scripps News it's already led to some confusion and misunderstanding from their friends and loved ones.
"The pandemic is never really going to be over for me as long as I have long COVID," Jackson said.
"Having my friends, my family, my employer, my disability provider not authenticate my experience, essentially just completely disregarding it, thinking that I'm being a drama queen or that this is just something that you can will away," said Johanna Añonuevo, living with long COVID.
"There is no public warning, no mention from public health officials from the presidential administrations, public health officials, that long COVID is a serious public health issue," said Olenka Sayko, living with long COVID. "They'll play it off and say that vaccination, Paxlovid, you know, helps you. I mean, I'm sure it helps some people, didn't help me."
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The World Health Organization defines long COVID as symptoms that are present for 3 months after being infected and linger for at least two months.
There are hundreds of long COVID clinics and rehab centers open now across the country, and research is ongoing. The National Institutes of Health pulled from more than $1 billion in congressional funding for its RECOVER program to study the long-term effects of COVID.
So, what are researchers focusing on when it comes to long COVID and treating it?
As mentioned, understanding what causes long COVID is a top priority. Scripps News spoke with Dr. Michael Brode at the University of Texas, who handles its post COVID-19 treatment operations, and he had two things he was focused on.
"The first is that there's clearly neurologic inflammation happening," Brode said. "We see that in studies that show that actually the part of the brain that should be keeping out inflammation is actually activating, causing inflammation."
The second has to do with oxygen in the bodies of people with long COVID.
"Heart pumps the blood, lungs put oxygen in the blood, but we find out that the oxygen returns to the heart without the body using it, so returns full of oxygen that the body didn't use," Brode said. "So the question is: Why didn't the body use that oxygen? Is it a problem of some metastablism, the body's ability to make energy from oxygen, or is it a problem with the abilities? The body's ability to extract that oxygen from the circulation, it could be both of those things. I think that problem of the body not using the oxygen and energy clearly explains the fatigue, the muscle pain."
Medical experts are still looking for prevention tools, but as of now, the best way to prevent long COVID is to prevent infection. That being said, there are some signs taking certain medications when a person first gets sick might make long COVID less likely to develop.
A study published in November found the common anti-viral Paxlovid reduced long COVID by about 25%, and in March, a preprint study released by the medical journal The Lancet found the diabetes drug Metformin could reduce long COVID rates by over 40%.
