Abbey Arredondo, a 23-year-old student at the University of Texas at El Paso, knew something wasn’t right. Her primary care doctor tried to convince her it was depression, but that wasn’t it.

After she got COVID-19 in January 2021, she began experiencing life-altering symptoms that didn’t go away: extreme fatigue, forgetfulness and brain fog, and most concerningly, her existing heart condition got worse.

When Arredondo finally talked to a cardiologist months later, she got her answer. She had long COVID, a range of long-term symptoms that can affect 10 to 30% of those who contract the virus in what an article by the American Medical Association called “a conundrum for physicians and researchers alike.”

“I was one of those people who knew that long COVID was possible, but I didn’t know that it has affected so many people,” Arredondo said, wishing more El Pasoans knew “that it’s real.”

Dr. Sanjay Chabra wishes the same thing. An El Paso physician and director of rheumatology at the Texas Arthritis Center, Chabra’s patient load includes increasing numbers of people with long COVID.

“Long COVID can affect anyone, at any age,” he said. “It’s affecting children, it’s affecting adults — as many as one to three or one out of four are getting long COVID when they’ve had the actual illness, and it’s typically more seen in women than men.”

Chabra wants El Pasoans to know that long COVID affects both healthy people and those with pre-existing health conditions, and can cause life-long tissue damage. While some people get over their symptoms in a matter of months, he has patients still suffering from it who were infected in early 2020 at the start of the pandemic.

“There really isn’t a treatment medically for it,” he said.

Between 24,000 and 73,000 El Pasoans may have suffered from long COVID, according to Wendy Walker, an infectious disease researcher and assistant professor at Texas Tech University Health Sciences Center El Paso. Her estimate is based on the total number already infected with the virus locally — more than 243,000 as of May 1 — and what scientists have learned about the frequency with which people develop long COVID symptoms.

The city of El Paso is not tracking long COVID locally, according to city spokesperson Laura Cruz Acosta.

Nationwide, as many as 23 million Americans have long COVID, and 1 million people are out of work because of it, according to a March report by the U.S. Government Accountability Office.

Symptoms range from mild to debilitating and can affect multiple body systems, Walker said. They include: shortness of breath, cough, sore throat and other respiratory issues; neurological effects like fatigue, concentration issues, brain fog, depression and insomnia; cardiovascular problems such as rapid heartbeat; varying types of pain including joint pain, headaches and muscle pain; fever, gut problems, loss of taste and smell, and rashes.

“We’re still learning a lot about long COVID,” Walker said. “We have not lived with this virus, SARS-CoV-2, for a very long time, and it takes scientists time to study and learn about things. So even where we are in the pandemic, between two and three years in — it’s still early in terms of the opportunity to do research on it.”

Living with long COVID

Rebecca Reza loves playing piano and violin. She’s an avid cyclist and has an active lifestyle — or at least she did before long COVID. The 43-year-old sports journalist and UTEP music major has seen her life transform radically since she got COVID in December 2021.

“I could not practice, I could not study, I couldn’t focus in class — my grades were just plummeting,” she said. “I had no idea what was going on, but the worst part of it was I was sleeping all the time and I just wasn’t feeling rested.”

Reza quit the UTEP symphony and dropped her piano classes for the spring semester. She hasn’t ridden her bike in months. Her symptoms include muscle weakness in her limbs, affecting her ability to play piano and violin; dizzy spells, extreme fatigue, trouble focusing and other cognitive issues. It took Reza several months to figure out the cause.

At first, a nurse suggested that she might have multiple sclerosis or fibromyalgia, then her primary care physician suggested she get blood work done. But Reza’s tests kept coming back normal. When her rheumatologist, Dr. Chabra, diagnosed her with long COVID, she said she cried tears of relief to finally know what was happening to her body.

“(My doctor) just took my hands and he’s like, ‘You’re not crazy,’” she said. “It sucks that it’s long COVID, and there’s not really a lot of research about it… but God, at least I have an answer.”

The lack of objective diagnostic tests or biomarkers for identifying long COVID means that many patients will face a difficult and frustrating task in trying to be accurately diagnosed, according to a 2021 article in the New England Journal of Medicine. That problem is compounded for women and people of color, who are more likely to have their symptoms ignored or dismissed by health care professionals.

Support groups for people with long COVID have emerged around the country, such as the COVID-19 Long Hauler Advocacy Project and Body Politic, which are focused on helping people with long COVID figure out how to get help and navigate the complexities of the health care system.

The interpersonal toll of long COVID

Corin Ramos, a 34-year-old El Pasoan, first contracted COVID back in October 2020. She’s had long COVID symptoms ever since. That means she needs to use an inhaler for her shortness of breath, and a motorized cart for when she shops at Costco because she gets too tired to walk. She used to enjoy hiking and playing sports with her husband and 6-year-old son.

“I can’t do those things anymore,” Ramos said.

Some of the other impacts on her life are more subtle.

“I sigh a lot, and really I’m just gasping for air,” she said. “A couple of times my partner thought I was giving him this passive-aggressive sigh, or my boss would think that too, and I have to remind them, ‘Hey, I’m trying to breathe here, it has nothing to do with the content of this conversation.’”

Ramos, a director of research at an advocacy nonprofit, said her job has been understanding and accommodating about her long COVID, but that’s not the case for a 30-year-old El Paso man with long COVID.

He asked not to be named because things are already strained at his job due to his long COVID, and he worried having his name published could worsen that.

His experience with neuropathy, what he called an absent-minded mental fog, has had a big impact on his job performance.

“I was somebody who could hold the conversation with, or be able to listen to multiple conversations and follow up with them and give direction and guidance,” he said. “After COVID, it turned into an experience of having a struggle even following one conversation or being able to understand what somebody was saying.”

With the country relaxing more pandemic restrictions, lifting masking requirements on planes as COVID case numbers rise throughout the United States, Dr. Chabra said long COVID is a compelling reason to keep using the tools available to avoid contracting the virus. Increasing evidence shows that vaccinated people with a breakthrough COVID case have a 50% lower risk of getting long COVID than unvaccinated people, he said. He emphasized the importance of good hand hygiene and social distancing. 

“All we can do as a community here is do our best by keeping our hygiene strong, making sure that we’re vigilant,” he said. “And as they slowly peel the onion of introducing us back into society, being prepared for those waves of illness that will come.”