Stacey Harris, a former business owner, gym goer and ax-thrower from Sioux Falls, now relies on oxygen nearly 24/7 and can't work.
Eric Roach, a Navy veteran and once-avid birdwatcher from Spearfish, now struggles with chronic fatigue and cognitive issues.
Harris and Roach both contracted COVID-19 more than a year ago and have been sick ever since.
While many South Dakota residents and healthcare workers feel some relief as the latest COVID-19 outbreak winds down, people with long COVID like Harris and Roach will continue to struggle with side effects for months or perhaps even years.
People with post-COVID conditions — also known as long, long-haul or chronic COVID — continue to have COVID-related or new, unrelated symptoms for at least two months, according to the World Health Organization. They are diagnosed with the condition when their symptoms can't be explained by any other diagnoses.
Chronic COVID doesn't just leave patients with physical and cognitive symptoms. It can cause frustration, anxiety and other mental health issues as they navigate their new conditions, physical limitations, and uncertainty about how long their symptoms will last. It can lead to debt and financial ruin.
Some long haulers, like Harris, become fully disabled and therefore in need of long-term medical care and government benefits.
"You know you were healthy and your body betrayed you and why isn't my body strong enough to fight this?" she asked herself in the hospital. "So that was hard, but then also coming home and not being able to do what you were doing before you got sick and then so wondering why did I survive this. For what, just to be like this?"
Harris, 53, said she's decided to accept her "new normal" by leaning on her support system and focusing on non-physical hobbies like reading and writing.
Roach, 67, said it's frustrating when the media and political leaders primarily focus on hospitalizations and deaths. Gov. Kristi Noem, for example, says the most important metric is the hospitalization rate, not the infection rate.
But higher infection rates can create more hospitalizations, deaths and chronic cases.
"What makes this group of hospitalized patients in the ICU and intubated and on a vent, what makes them any more important or any less important than the group in the long haulers?" Roach asked.
Harris and Roach have found medical help through local and out-of-state doctors, and emotional support from their loved ones and online communities for long haulers.
Harris will also be traveling to Minnesota next month to visit the Mayo Clinic, where they have a specialty, interdisciplinary clinic focused on long COVID patients. She waited three months for an opening.
Sanford, Avera and Monument Health can provide care for long-haul patients but do not have dedicated clinics, the healthcare systems told SDBP.
South Dakota and North Dakota are the only states without any of these clinics, according to Survivor Corps, a patient advocate group.
Dr. Joann Elmore treats patients at UCLA's long-haul clinic and is leading INSPIRE, a CDC-funded study about the condition.
"The certainly are some long COVID symptoms but how common they are and what are the long COVID symptoms still needs to be teased out and studied," she said.
Other unknowns involve the best way to diagnose and treat long COVID, how long the condition will last, and what makes people susceptible to it.
At first, doctors believed patients were more likely to develop the symptoms if they had a serious infection.
"Now we're wondering, are the the different variants going to be less of a risk for long COVID?" Elmore said. "Some are questioning whether can you have a completely asymptomatic bout of COVID and yet still get long COIVD. Some are questioning what about the impact of the vaccine? Does that make the long COVID symptoms go away?"
Roach's online support groups illustrate the diversity of patients and the unknowns they are dealing with.
He said the members are all ages and from all over the world. Some got sick before they were vaccinated while others were fully boosted. Some had pre-conditions while others could run marathons. And some seemed to recover only to have their symptoms return months later.
From ax thrower to oxygen user
Stacey Harris, a single mother, used to own a spa and work at an entertainment venue where she enjoyed throwing axes in her spare time. The Sioux Falls woman worked out three times a week and enjoyed dancing and karaoke.
Harris took precautions when COVID broke out since her daughter, a 21-year-old who attends Augustana University, has severe asthma, which puts her at risk for serious infection.
However they both caught COVID in September 2020 and had to spend time in the hospital.
Doctors learned Harris also had pneumonia and eventually had to place her on the highest level of oxygen. Harris said her doctors wanted to put her on a ventilator but she resisted.
"It felt like an elephant was sitting on my chest," she said during a phone interview with SDPB. "I couldn't breathe. I would try to take a breath, I would start coughing and then I would vomit."
Harris' loved ones weren't allowed to visit as she fought to survive while listening to other patients code, be revived and die. She went home after a two-week hospital stay.
"I've been on oxygen ever since," Harris said.
Harris always needs oxygen when standing or walking. She can usually take it off when sitting down but had to begin using it toward the end of her hour-long interview with SDPB.
“I'm sorry, I gotta put my oxygen on. I'm just talking a lot and it makes me out of breath," Harris said with a laugh.
Harris now has lung scaring, low oxygen, an irregular and overactive heartbeat, and nerve damage, which sometimes make her hands numb and weak . She has stomach issues and pain while eating, a possible side effect of one of her COVID treatment drugs. Harris is also dealing with anxiety, depression, nightmares, forgetfulness and chronic fatigue.
"Even a simple task of trying to vacuum my carpet or to sweep, if I'm doing that I can't stand for more than maybe two minutes and then I have to sit down and rest," she said. "So it's hard because I'm not able to do most things that I was able to do before getting COVID. I used to teach people how to throw axes. And I can't do any of that now."
Harris also experiences brief moments of strong smells that aren't really there. One of her repeat phantom smells is cigarettes even though she doesn't smoke.
Harris takes medications and attends physical and mental health therapy to help with her new conditions. But she and her doctors believe some of her symptoms will be permanent.
Harris uses Facebook to update her friends about her progress and many people respond by telling her how strong she is.
"At first it was hard for me to hear that because I felt like I had to be strong for everybody else because they told me I was strong. I didn't allow myself to grieve over what I had been through," she said.
Harris now asks her friends to use the word resilient, which she feels accurately describes her strength but also her pain.
Harris recently obtained disability benefits since she can't work anymore. Before that, she used state COVID aid to cover her rent.
Harris still relies on her daughter — who does not have any chronic symptoms — other family members, friends, her church and business colleagues to help with financial aid, supplies and chores.
"Disability is not enough to live off of," she said.
Chronic fatigue, gaslighting
Eric Roach also took took steps to avoid COVID since he's a lung cancer survivor with diabetes and COPD, a lung disease. The Spearfish man tries to quarantine as much as possible and wears a mask when he goes out.
Before getting sick, Roach spent hours walking around Spearfish Creek, birdwatching and taking photos of Lucy and Fred, two bald eagles who regularly visit the area.
Roach, who wore two masks during an interview with SDPB, spent 12 years as a parachute rigger and loadmaster in the Navy. He then worked as a paramedic and medical tech but retired after a back injury.
Roach contracted COVID in November 2020, before vaccines were available and when there were limitations on testing. He never got tested but had classic symptoms including the loss of smell and taste.
Roach became very sick but never went to the hospital, which he regrets. He later learned he contracted pneumonia and lost 60 pounds during his first infection.
Roach caught COVID a second time in November 2021 after being vaccinated.
Like Harris, Roach has chronic fatigue, low oxygen levels and phantom smells. His smells have included pencil shavings and car exhaust.
“I’ll know when I get out of bed if it's an OK day or if it's going to be a nap in my recliner most of the day," he said. "I hate those days because to me it's a waste. But I can't do anything about it.”
Roach can no longer bird watch or edit photos for hours at a time. Even short outings can have a long-term impact.
"You might not pay for it that day but for the next day or three days you might be paying for it. You might not get out of bed," he said.
Roach also hasn't found a way to prevent or predict fatigue.
"You can't really bank up, get ahead of the game by resting and napping for a couple of days," he said.
Roach also lost his voice for six months and continues to struggle with tinnitus, a skin rash, headaches and cognitive issues.
"You forget words while you're talking, you lose track of where you are in a conversation," he said. "You can be talking and something will click or you get slightly distracted and whatever thoughts you had, it's like somebody erased the dry erase board."
Roach receives healthcare through Veterans Affairs and most of his appointments have been virtual, not in-person. Some of his doctors, such as his neurologist who lives in Philadelphia, are based out-of-state.
Roach loves his primary care provider, whose son also has long COVID. But he says he's been "gaslit" by other doctors who say he's lying or his symptoms are all in his head — something that other long haulers report.
"I know it's happening with me. You know, it's my body. I know how I was before COVID," Roach said. "How can I not know what I'm talking about if I'm the one that's experiencing these symptoms?"
Roach also sees a therapist to deal with PTSD symptoms, such as nightmares and vivid dreams about COVID and his time in the military.
Hope through research
INSPIRE, Dr. Joann Elmore's research project at UCLA, will study the symptoms and prevalence of long COVID.
Many existing studies don't distinguish between correlation and causation, Elmore said. How many people's symptoms were caused by COVID-19 and how many just happened to develop symptoms they would have developed even if they hadn't been infected?
"Many of the early publications on long COVID have a bias and are only presenting an incomplete and potentially inaccurate picture," she said. "Because they don't have controls and they also need to be gathering data from patients before you had COVD."
Elmore said she hopes their findings can help other patients with chronic illnesses, not just those with long COVID.
Other infections can cause long-term symptoms called infection sequelae. There's also post-intensive care syndrome which some people develop after stays in an intensive care unit.
Some chronic COVID symptoms overlap with these other long-term conditions, Elmore said. But others, like the loss of smell, are unique to COVID.
Adults can sign up to participate in the INSPIRE study if they took a COVID test within the last six weeks after having COVID-like symptoms — regardless of whether they tested negative or positive.
