Step into Marjorie Roberts' home office and her pictures tell the story of the best moments of her life.

There is a picture of her receiving her doctorate degree in business. Then, there is a picture of her and her husband from their final trip to Las Vegas before the pandemic.

But the pictures also show a life Roberts says she will never live again because of what COVID-19 has done to her.

“You know, growing up your parents and the world tell you to go to the military, get a job, work, buy a house," Roberts said, as she looks at her accomplishments on her wall. "I did everything.”

Prior to the pandemic, Roberts managed a gift shop at a hospital in Atlanta.

“I was just happy. My life was good. It wasn’t perfect," she said.

Not long after she says the gift shop closed in March of 2020, she felt the symptoms of COVID-19.

“That morning I woke up, I was fine. I was fine, and by the time that the sun went down that night, my life had forever changed," Roberts recalled. “I just felt bad and the fatigue, and it just happened so quick.”

She is one of the country’s earliest COVID-19 survivors, but now about 20 months later, her battle continues.

Doctors found damage to her lungs, her liver, and she even lost teeth, since she had COVID.

“Seven teeth all at once, in the front my mouth," Roberts said.

A UC Davis study found as many as a third of COVID-19 survivors live with a symptom of the virus long-term.

Roberts says as a COVID-19 long-hauler, it’s hard to work. She is a certified life coach.

“I still have like no energy. I do walk. It took me months to be able to walk up this block," Roberts said.

Roberts says while COVID-19 has hurt her health, it’s also hurt how she and her husband get by.

“We went from a two-income house, savings, to him. It’s all on him," she said.

“We all know someone who has been directly impacted by this. Many of them are still suffering," says Chris Kocher, who leads COVID Survivors for Change.

The nonpartisan nationwide group is pushing for more government support for COVID-19 long-haulers, many of whom are now struggling to make a living.

In July, the Biden administration issued new guidance that said COVID long-haulers may qualify for government disability assistance, but Kocher said more needs to be done.

“This is a new condition. This is a new disease, so we need to make sure we are listening. The medical system is listening. To people who have COVID, first and for most, they’re the experts in what their bodies are going through, what their journey of healing has been," Kocher said.

These days, Roberts spends much of her time in a prayer room she's created in her home.

"This is where the magic happens," she said, as she looked at her Bible.

Roberts also leads a weekly support group for COVID-19 long haulers like herself.

“We stick together," she said. "Because we’re all we got.”

The truth about long-haul COVID is that at this point, there is much we don’t know.

“I’m going to be OK because have to. I have to, I have no choice," Roberts said.

While doctors work to find answers as to what causes long-haul COVID and how long the impact could last, those still suffering, like Roberts, say they can only try to move past its impact on their bodies, their lives, and their livelihoods.

A drug that has shown promise in HIV patients could be successful in combating symptoms for coronavirus "long haulers.” The trial is set to start this spring and doctors say if it works, it could bring relief to many.

“I have thrown everything and the kitchen sink at this problem and I’ve not been able to move the needle very much,” says Eli Musser.

It's as if he's had COVID-19 for a year.

“About two months in the apex of these symptoms, I woke up and couldn’t use my legs. I absolutely couldn’t walk,” Musser said. “I couldn’t force my legs to move and looking back, these are all telltale signs of severe COVID, neuro COVID particularly.”

He got COVID-19 in March 2020. Since then, he's been through the worst of the worst and then some. He’s visited the hospital at least a dozen times. On a good day, he can do his breathing exercises. He once had nearly 40 symptoms. On a bad day, many of them hang over him.

“The ones I’m left with, I have fatigue, muscle weakness, those go together for me,” Musser said. “I get tired and worn out very quickly. I have dizziness and balance issues and vertigo. Those sort of go together. I have shortness of breath and breathing issues.”

There were so many things he was supposed to do. He was about to release a record. He was only a few weeks away from getting married. He and his fiancee both got sick. While she bounced back, he's still trying to manage COVID-19 every day.

“They’re very difficult for me to look at,” Musser said. “It's hard. I not only miss my life, I just don’t know when they’re coming back or when I’m coming back. To see those images, I forget I was a normal person and that I want to be back there someday.”

This is what it feels like to be a COVID-19 long hauler.

“It's all as a result of the initial COVID infection causing the immune response to create all these unusual, bizarre events,” says Dr. Norman Gaylis, a rheumatologist who now helps coronavirus long haulers.

He's about to start a clinical trial for those who can't get COVID-19 to go away.

“There’s a drug called ‘leronlimab,’ it’s a monoclonal antibody, The company that manufactures the drug is a company called Cytodine and this drug has been in the research phase for HIV for the last six or seven years and the results in HIV are very, very promising,” said Gaylis.

It's a small group and a typical blinded study. To get in, you need proof of COVID-19, which isn't always easy.

“It's unfortunate, in the early parts of the pandemic, there weren’t enough tests around to test people so there are definitely people around who had COVID that we don’t have evidence of which is just bad luck,” Gaylis said.

Musser is one of those who didn't have the PCR test, but he was positive for antibodies which makes him a candidate. He'll try anything. During his long battle, he's found support groups and breathing groups, and now he's hopeful for the promise of a new drug.

“We are all facing, whatever our symptoms are, however severe or mild, we’re all facing the same thing which is absolute crushing uncertainty,” Musser said. “We want to get back to our lives.”

“There is hope coming so my honest belief is I wouldn’t be doing this if I didn’t really truly believe we’re getting some light at the end of the tunnel,” Gaylis said.

Only time will tell, but it's one step in the right direction for the long battle of this pandemic.

"I was a healthy 30-year-old firefighter paramedic working out five to six days a week. And this is how COVID affected me," said Karyn Bishof, founder of the COVID-19 Longhauler Advocacy Project. 

Karyn Bishof was diagnosed with COVID-19 in March of 2020. She had a moderate case and was never hospitalized. But now, more than a year later, she says lingering symptoms are so bad she can no longer work.

"I'm still dealing with over 60 different symptoms," she said. "I've had a headache every single day at a level of seven out of 10 or higher... I don't sleep. I may be average, you know, 20 to 25 hours a week of sleep... my feet and my legs swell and turn purple."

Bishop is a long hauler — a group that experiences symptoms long after recovering from the coronavirus.

And public health experts warn long COVID is the next big health emergency in the wake of COVID-19. 

"It is a concerning problem because so many people have gotten sick that even if only a small fraction have a persistent disability or medical problems, that's still a lot of people in the U.S. and globally," said Dr. Jesse Goodman, professor of medicine and infectious diseases at Georgetown University.

There's no official count of long haulers in the US. A recent CDC study found two-thirds of non-hospitalized COVID-19 patients went back to their doctors seeking relief from symptoms up to six months after contracting the virus. A new Stanford University study finds it’s even higher for those who were hospitalized.

In February, the NIH launched a $1.15 billion initiative to study and collect data on long COVID, its causes, and possible treatments. The four-year program is only in the beginning stages. 

"Ideally, this would have come many months earlier, and we have more of that data now," Goodman said. 

Democratic Congressman Don Beyer of Virginia has introduced a $90 million bipartisan bill. It would create a patient registry where long haulers could self-report their symptoms and treatments that have worked for them. And it would provide the CDC with funding to educate medical providers and the general public about long COVID.  

"Getting lots of dialogue and a sense of community with other people who suffer from long COVID can give people, first of all, sense that they're not crazy and a sense of hope and a sense of how the disease unfolds and what other people do to get better," Beyer said. 

It could also help bolster the case for continued financial aid as the country recovers from the pandemic.

"As we develop this much larger database of long COVID symptoms, it gives us a much better policy argument to extend unemployment benefits to the people that have long COVID," Beyer said. 

Those benefits are essential for long haulers like Bishof,  who says she has to spend most of her day in bed.

"If you're out of work, people are losing their homes, they're losing their cars, they're falling behind on bills and credit cards," Bishof said. "Changing the qualifications for some of these programs like food stamps or like Medicaid, allowing these people to obtain medical coverage and obtain at least the basic needs to provide for them and their families during this interim time is imperative."

Kellan Howell at Newsy first reported this story.