‘I deteriorated.’ Woman with long COVID watches body transform as it attacks itself

Charlotte Observer - 3/18/2024

The question came from behind the doctor’s office front desk.

“Are you Agnes’ grandmother?” the woman asked.

“No, I’m her mom,” Kate Whitley responded.

Whitley wasn’t offended or surprised. The 43-year old is getting used to her new silver hair and uneven skin. It’s the ruthless insomnia and fatigue that are unbearable.

“I deteriorated,” Whitley said in an interview with McClatchy News.

Her voice moves from exasperated to sad to indignant while describing the dizzying roster of changes that have seized her body in less than two years.

Whitley came down with COVID-19 in 2022, two weeks after her daughter’s school lifted its mask mandate. Now, she is one of an estimated 17.6 million Americans who suffer from long COVID, according to a recent survey from the Centers for Disease Control and Prevention.

Long COVID is a wide range of recurring or new health issues that persist for weeks, months or years after being infected with COVID-19, according to the CDC. Some people with long COVID can continue to function somewhat normally, but a huge portion of them cannot, making it difficult for many to even leave their homes. Common symptoms include fatigue, brain fog and shortness of breath, as well as varying degrees of disability, immune dysregulation, and organ and tissue damage.

Soon after Whitley’s initial infection, a bout of sensitivity to light and sound kept her in bed for a month. Even now, her menstrual period flattens her for a week at a time. She can’t remember things and doesn’t know how much energy she can count on from day to day. She gets winded easily.

Long COVID has also provoked a severe case of depression Whitley didn’t have before.

“COVID hit my brain hard,” she said. “I’m totally reliant on pills to not kill myself.”

Until 2022, Whitley — a graphic designer living in Nashville, Tennessee — was a sprightly, social and ambitious business owner, wife and mother. She was so outgoing she says she “could talk to a brick wall” and was one of those people who juggled a million things at once.

After college, Whitley built a home goods printing business out of her bedroom, paying off her student loans in only three years.

“I was the go-getter businesswoman,” she said. Lying in bed was never her M.O.

Long COVID and autoimmunity

Whitley’s ongoing condition is familiar among scientists studying long COVID. Research has drawn parallels between long COVID and autoimmune diseases, illnesses in which the body attacks healthy tissue by mistake.

According to recent studies, long COVID patients show immune dysfunction, immune cell activity and autoimmune antibody production. A Jan. 19 study published by the National Library of Medicine found markers of tissue damage and inflammation in the blood of people with long COVID.

Whitley is well-acquainted with autoimmune reactions in the body. She was diagnosed with Hashimoto’s disease in 2018. Hashimoto’s causes the thyroid’s hormone-producing cells to die, according to the Mayo Clinic. This can cause fatigue, muscle weakness, hair loss and many other symptoms. But Whitley got very lucky. At the time of her diagnosis, the late-30’s business owner found a way to keep symptoms at bay, living well with it for years by following a strict diet and a clean lifestyle.

“I was doing great,” she said.

COVID changed all that. In addition to her COVID infection initiating a swarm of other symptoms, it kicked up the Hashimoto’s as well. Now, no amount of eating healthy will keep her body from attacking itself.

“You cannot broccoli and kale this COVID problem away,” she said.

What’s worse for Whitley and others like her is that two recent studies found that COVID is linked to an increased risk for developing new autoimmune diseases.

“I understand what immune systems do,” Whitley said. “A massive traumatic health event can trigger an autoimmune disease. And then once you get one, it is extremely easy to get a second one.”

Raising awareness

On March 15, Whitley, her family and dozens of others with long COVID gathered at the Lincoln Memorial in Washington, D.C., for Long COVID Awareness Day. It seemed fitting that the day also fell in the middle of Autoimmune Disease Awareness Month.

Whitley knows she’s one of the “lucky ones” to just be able to attend a gathering like this. A lot of people with long COVID can barely stand up, she explained. The in-person turnout was small for this reason, with people tuning in from home via FaceTime and other digital means.

The group came together to raise awareness for the millions who have long COVID and encourage the government to declare the condition a national emergency. Activists and advocates hope to highlight the urgent need for funding to accelerate research for effective treatments.

They are asking for a moonshot, echoing the scientists’ pleas that if long COVID research continues to be underfunded and uncoordinated, treatments will remain out of reach. They want the government to invest $1 billion annually over the next 10 years to address the problem.

Another person in attendance, Joshua Pribanic, has also been living with long COVID since his first infection in January 2021.

“With the damage that’s happening to the immune system — that kind of damage was seen within the HIV/AIDS community (due to) viral persistence,” he said in an interview with McClatchy News.

Research has found that the COVID virus lingers in the cells, which could be the root cause of long COVID.

Pribanic is the founder of the Long COVID Action Project. He says he and people with long COVID are “looking at (their) deathbeds.”

To him, Whitley, and countless others, government action is a matter of life and death.

Until then, long COVID patients such as Whitley and Pribanic are frozen in time.

Whitley rations her energy like coffee beans in World War II. Every task requires hours of recuperation, so she chooses carefully. If she goes on a walk with her daughter, she knows she will need to lie down afterward.

Even with her most discerning calculations, however, she is still often unable to work, help her husband cook a meal or take her daughter to the playground.

“I need help,” Whitley said. “Why can’t I get better? I don’t want to die.”

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