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'It’s like being sick every day of your life' | Long haulers share journey after battling COVID-19

Justin Wilhite, 40, got sick early in March 2020 and one year later, he now needs a wheelchair to get around.

SACRAMENTO, Calif. — What was once a walk in the park for Justin Wilhite, literally now includes wheels. Wilhite is experiencing a new normal while using a wheelchair that he never used before battling COVID-19. 

"Today is one year since I developed symptoms," Wilhite said on March 4, 2021. 

COVID has changed Wilhite, a father of two boys and husband, forever. 

"I have been sick for 13 months," he said. "I had the flu then COVID." 

Wilhite first shared his battle with COVID on Twitter saying, 'I have it. Don’t sleep on this thing people. I’m a very healthy type I diabetic. My body is fighting it very well but it’s kicking my ass. Don’t be a moron. Stay home!"

His tweet, for lack of a better term, went viral. Nearly 40,000 retweets later, Wilhite has reached many others battling COVID and has created an online support group through his account. 

He shares his struggle now of being a long-hauler, someone who continues to experience symptoms of COVID after an acute infection. Wilhite says his symptoms that linger include shortness of breathe, tiredness, fatigue and tightening in the chest. 

"It's like being sick everyday of your life,' Wilhite said.  

In September 2020, Wilhite's health took a sharp turn downward. 

"Then, I either got COVID again or relapsed and I've been downhill since. I can't walk across the street. And I'll tell ya, now I have four wheels," he said. 

Every long-hauler's symptoms are different. 

About a third of COVID-19 patients who were never sick enough to require hospitalization continue to complain months later of symptoms like fatigue, loss of smell or taste and "brain fog," University of Washington (UW) researchers found.

Andrea Tomasek in Minnesota, a 37-year-old mom of two, she constantly has a fever.

"I still have a fever," Tomasek said over Zoom while showing a thermometer that she just put inside her ear to get a temperature. 

Credit: Andrea Tomasek
Andrea Tomasek in the hospital with COVID

Tomasek wants others to know, this could happen to anyone. 

"Before I caught COVID I was healthy and we've been sick for almost a year now. This is something I wouldn't wish upon my worst enemy," she said. 

In Tomasek's case, it appears to be common for others who had no pre-existing conditions. 

"Some of them didn't have any symptoms at all. But now several weeks after recovering from acute phase of the illness they continue to have certain symptoms that are bothering them," said Dr. Mark Avdolovic with UC Davis Health. 

Dr. Avdolovic is the Associate Professor of Clinical Medicine at UC Davis. He is helping lead the region's first Post-COVID-19 clinic to examine the long-term effects of the virus. 

"Based on what your pattern of symptoms are we try and get that information to data gathering and then team you up with most appropriate set of clinicians that can help you with your symptoms," Dr. Avdolovic said. 

To participate in the clinic and receive care, you must have a positive COVID result. Wilhite does not have one since he started to feel sick at a time when testing wasn't readily available. 

"I really wish more people would understand what long COVID is and take that into consideration when deciding how much risk you are willing to take," Tomasek said. 

Both Tomasek and Wilhite have been incredibly careful of COVID since they became sick. They hope others will listen to their story instead of shy away from their reality. 

"There were a couple times that I didn't want to go to bed because I didn't think I would wake up," Wilhite shared. 

Wilhite is hopeful he'll adjust and slowly recover but he knows it's a long road ahead. 

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