Sitting in a recliner in her south Kansas City home, wearing a bright pink sweater, matching lipstick, and with her nails neatly manicured, Shantell Williams recalls the months she spent recovering and rehabbing from the effects of long COVID.

Her vivid outfit stands in contrast to the dark story she shares about her experience with the disease.

Brain fog, joint pain, mobility problems, heart issues, and hair loss were just a few of the challenges that long COVID put on her body.

Five years after the declaration of the worldwide COVID-19 pandemic, Williams, 56, finds herself as a part of a small portion of adults in the U.S. who suffered from an initial infection from the virus but continue to have lingering health issues long after showing no signs of infection.

A study by the Centers for Disease Control and Prevention shows that nationally, 6.4% of U.S. adults reported ever having experienced long COVID. For the region, people in Kansas and Missouri who were initially infected with the virus suffer the effects of long COVID at rates between 7.2% and 8.8%.

From long-haulers to long COVID

Williams tested positive in December 2020, months before vaccines were available to the public. She received an antibody infusion and initially felt fine. But a month later, she says her health took a terrifying turn. “I woke up, my heart hurt real bad,” she recalled. Though her husband urged her to go to the hospital, she insisted on finishing out her workday.

When she finally sought medical attention, doctors found nothing alarming, diagnosing her instead with a urinary tract infection. Within 24 hours, she was back in the emergency room, and this time, it was clear something was seriously wrong.

Williams recalled doctors scrambling to understand what was happening to her. “They were having trouble with my heart,” Williams said. “They had me hooked up to a heart machine, everything.” Doctors repeatedly asked if she had a history of heart failure. “I kept telling him, no, no, no, no, not knowing all along that my heart was failing.”

She was rushed to the ICU, where even the slightest movement made her heart rate plummet. “Every time I moved, my heart rate would drop, drop, drop,” she recalled. “Any time I would turn, drop, drop.” One night, feeling increasingly unwell, she begged for fluids, but the nurse warned, “Miss Williams, we can’t give you fluids because if we give you fluids, then that’s going to cause more problems for your heart.”

Hours later, doctors rushed in, and the next thing she remembered was waking up the following morning, being told she had suffered a “rough night.” Williams had to be resuscitated by doctors.

Williams’ struggle with long COVID began before it even had a name. Before she left the hospital’s intensive care unit, she says the medical staff told her she had “long-haulers.” Since then, the accepted name for the condition is long COVID.

Before contracting the virus, Williams was active. The lingering health effects have forced her to give up walking four or more miles a day. “I mean, I get around, but it’s not like it used to be. When there’s pain, there’s pain.” She gets shots in her pelvis to help her to be able to move around. “Some days I don’t feel good,” she said.

Other issues remain. “My hair began to come out like I had been having chemo treatments,” she said. “Every morning I would get up and I would comb my hair and brush it. It would just come out in clumps and clumps,” she recalled.

The hospital stay and subsequent treatment left her with a mountain of medical bills.

Life trajectories changed by disease

Kansas City resident Mikayla Dreyer, 34, also had her first brush with a COVID-19 infection in December 2020. She was also active before contracting the virus—doing yoga and lots of outdoor activities. Dreyer says she was diligent in taking precautions to not get infected but did anyway.

For Dreyer, the ill effects of having COVID never went away. She has dealt with long COVID symptoms, including a diagnosis of POTS, a condition characterized by a significant increase in heart rate when standing up from sitting or lying down.

Dreyer says she has yet to return to the active lifestyle she knew before.

Long COVID changed the course of Kansas City resident Jen Benkert-Goche’s life.

Benkert-Goche, 33, has suffered from long COVID and major health issues that have arisen after contracting the virus in 2021. Benkert-Goche contracted the virus while they and their wife were going through fertility treatments. Because of the complications from COVID, they were forced to stop fertility treatments.

Because of the complications from COVID, they were forced to stop fertility treatments. Part of the diagnosis was Ehlers-Danlos Syndrome, a group of inherited connective tissue disorders characterized by joint hypermobility, stretchy skin, and other systemic abnormalities. Due to this diagnosis, Benkert-Goche was forced to have a complete hysterectomy at 32 years old.

“COVID was the first domino to fall. It changed all our plans and kind of the trajectory of what our life was going to be,” Benkert-Goche said.

A fight to keep going

Shantell Williams remains resilient through her battle with the chronic health conditions tied to long COVID. She takes every COVID shot available, stays cautious in public, and works to maintain a positive outlook. “I know God kept me here for a reason,” she said. “I try to make a difference in everybody’s life,” Williams said.

“Even on my worst days, I always try to say something funny at work,” Williams said. Her children check on her frequently, especially her son, who “comes in and peeks” and reports back to the family if something seems off.

Though the fear of reinfection rests in the back of her mind, she refuses to let it consume her. She knows there are others who suffer like her. “If you do have long COVID, you’re not by yourself, you can still make it. Just keep trying and don’t quit,” Williams said.

2025 The Kansas City Star. Distributed by Tribune Content Agency, LLC.