COVID-19 ‘Long Haulers’ Face Prolonged Illness Months After Testing Positive

WEST HAVEN, Utah — For many, COVID-19 has turned into a prolonged illness with symptoms lasting beyond the duration of the initial virus.

A study published by the British Medical Journal reports about 10% of those who get infected are likely to endure symptoms lasting beyond three weeks, while a CDC report shows that number could be as high as 35%.

A West Haven woman is one of the hundreds of Utahns trying to navigate their lives after the illness. From a list of 100 symptoms, Tressa Smith highlighted the 75 she’s personally experienced in the last several months. She tested positive for COVID-19 on April 20.

“Worst thing that I’d ever felt in my life,” she said. “I had a fever, cough, body aches, felt horrible.” She said it was 1,000 times worse than the flu.

Although it’s been more than four months since Smith tested positive, she’s still sick.

“This is week 17,” she said.

Smith calls herself a “long hauler” — someone who no longer has the virus but is still suffering from a post-COVID-19 syndrome affecting the whole body.

“All my testing and lab work came back normal,” Smith said. “It’s extremely frustrating. It’s defeating.”

Dr. Dixie Harris, a pulmonologist with Intermountain Healthcare, says the long-hauler name is appropriate. “I think it’s a really good description of how they’re feeling, like they’re hauling themselves through this disease and through the recovery process,” she said.

“It feels like this heaviness that I can’t get rid of,” Smith added.

While researchers haven’t established a clear definition yet, the British Medical Journal considers those who have experienced symptoms beyond three weeks to have post-acute COVID-19, and those who continue to feel sick after three months to have long COVID.

Harris says the common symptoms include: “Shortness of breath, coughing, chest pain, muscle aches is a very common one, joint aches; some patients are still having loss of smell.”

Smith says her extreme fatigue is constant. “I’m not able to cook dinner for my kids every night, hardly any night,” she said.

She said she also struggles to drive her kids around. “I’m scared to drive. I’ve passed out a few times, and I don’t want to do that when I’m driving them anywhere,” she said.

This is particularly frustrating since Smith said before she got sick she was perfectly healthy. “My heart was so healthy that I had an athlete’s heart rate,” she said. “I was able to do pretty much anything and everything that I wanted to do.”

Additionally, Smith has also missed a couple days of work every week for the last several months. But what’s really concerns her is the memory loss she’s now experiencing. Smith does sales and marketing for a technology company and says she can’t afford to not remember important details.

“I forget words that I’m supposed to know,” she explained.

Harris says an article out of China identified changes in the brain through MRI scans in patients three months after infection.

“Nobody wants to lose their memory,” she said. “So I think that is concerning.”

Smith is also worried about the long-term cardiac effects. She’s been to the emergency room twice in the last couple of weeks and experienced tachycardia.

“Patients will call it palpitations. They’ll actually kind of (say), ‘I feel like my heart is racing and I feel like my heart is jumping,’” Harris explained. “That makes me very worried. I really don’t want to get this virus. You only have one heart, and is your heart getting damaged?”

Harris has already seen about 30 long haulers in her own clinic. She has one goal: “What can we do to get people living really the healthiest lives they possibly can back in the workforce, back living full, productive, meaningful lives?”

Harris encourages patients to reach out to their primary care doctor and specialists. “Continue to be vocal, continue to seek care,” she said, emphasizing that her team is learning from the experiences of their patients.

She encourages long haulers to be patient as they heal. “Don’t get frustrated, it takes time, and other people are going through this too; you’re not alone,” she said.

Practicing self-care, sleeping enough, eating healthy, embracing relaxation techniques are all tools Harris promotes. “Really, slowly allow yourself enough time to get back to normal activities,” she said.

Smith joined the Utah COVID Long Haulers Facebook group. She noted that many of the group members share the same symptoms, and she takes comfort in knowing she’s not alone.

“It’s been a lifesaver for me,” Smith said. She swaps stories and tips with others who are in her same position.

Smith said she longs for the day when she will be healthy again. “Anything and everything that I have, I would give up to feel better,” she said. “I will definitely be far more appreciative of life than I ever have before.”

She warns others to be cautious and to take the virus seriously. “This is a real thing,” she said. “You don’t want to just rush out and get it, you don’t.”

“For anybody that’s had suffered from this, my heart goes out to you,” Harris said. But she holds on to hope after seeing some of her patients slowly get better and return to work.

Harris also acknowledged that many people facing prolonged symptoms of the virus never actually tested positive for COVID-19. While she says this makes it difficult to confirm, she admits there are flaws in the testing and says those experiencing symptoms get the attention and treatment they need.

“I’m not going to discount if they’re having symptoms that need to be addressed,” she said.

Harris also says many people with lasting sickness also face additional mental and emotional challenges. She encourages people to register for a COVID-19 Recovery Support Group starting later this month, put on by University of Utah Health.