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'I feel prisoner to my own body' | The fight to understand long-lasting COVID-19 symptoms

People still feeling the effects of COVID-19 are known as long-haulers and their symptoms can last weeks, months and sometimes over a year after getting the virus.

LOUISVILLE, Ky. — As the COVID-19 pandemic has reigned top of mind for many, lowering cases is the priority. However there's an entire group of people suffering weeks, months and sometimes over a year after getting the virus.

People still feeling the effects of COVID-19 are known as long-haulers and their symptoms can range from ongoing fatigue, migraines and brain fog.

WHAS11's Kristin Goodwillie spoke to several people feeling the effects of COVID-19 long after recovering from the virus and found out what health officials are doing to fight the long-lasting effects. 

Penny McCurdy worked in the COVID-19 unit during the height of the pandemic, until she got the disease November 2020. Almost a year later she's still getting treatment for symptoms.

"As my life you know, it's been debilitating," McCurdy said. "Physically and psychologically. I feel prisoner to my own body."

McCurdy has not returned to work and was diagnosed with PTSD from the myriad of problems she has had since having COVID-19. 

Her vision has changed, fatigue is a constant and the brain fog significant. 

Norton Healthcare has created both a brain fog and long-hauler clinic to help those in Kentucky and Southern Indiana.

Candice Gray-Cunningham, a nurse in the clinic, only sees these patients — the way they treat them has not changed much since the pandemic began. 

"I say, 'I don't know' a lot during the day with my patients," Gray-Cunningham said. "People come in feeling off, but all their labs, head imaging, chest imaging come back normal."

An inherently invisible illness — it can feel isolating. Other long-haulers facing the unknown like McCurdy including Robert Moss and Carmen Caldera-Brzoska have turned to social media groups to compare side effects and possible solutions. 

"I left validated that it wasn't all in my head, that it was real, and it was really happening," Caldera-Brzoska said.

It's been eight months since she got COVID-19 and over a year and a half for Moss.

"I have a lot of support from my family and I talk to a lot of people online about it too," Moss said. "That's where I found out other people were having side effects."

However even with this support from others and their family, it's a waiting game as clear answers to their symptoms are readily available.

"You don't have a clue what's going to happen tomorrow or next week or next year," Caldera-Brzoska said. "You just have to wait and that's very frustrating."

Realizing that others are going through the same thing, between doctors and patients, there's still optimistic their diagnosis will get better. 

"I don't give up, I'm pretty hopeful," Moss said.

For more information on Norton Healthcare's long-term COVID-19 clinic, click here.

RELATED: UofL researchers examine COVID-19 survivors with lingering symptoms to improve treatment

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