KANSAS CITY, Mo. — Desa Hanchette didn't understand how close to death she had come until she began to reflect.
"It was that quick," she said.
At a follow up appointment in November for a then-recent hand surgery, Hanchette's health took a sudden turn for the worse and her vitals dropped in a matter of minutes.
“I basically crashed there," she said. "They wouldn’t leave me alone. They called in a crash team, and it moved very quickly from there [and] I don’t really remember a whole lot."
Amanda Finley, fellow COVID-19 survivor, said that Hanchette's doctors now believe she had coronavirus.
“But she got sick back in October, and she was not the only one,” Finley said.
Others like Hanchette and Finley have recovered from COVID-19, but not it’s long lasting effects – ones they didn’t speak of at first.
“You’re almost like a leper," Hanchette said. "People don’t want to believe you, [they say] it’s fake."
So Finley took it upon herself to create a space for survivors to share their stories – the COVID-19 Long Haulers group on Facebook. Finley contracted the novel coronavirus in early March, and since then, Hanchette and she have bonded over their recovery and desire to support others and share knowledge. The group is open to survivors, those still battling the virus and their caregivers.
“When 7,500 people come together to say, ‘Me too,’ that’s not something to brush off,” Finley said. “It started out as something to compare notes like, 'Hey, I’m having my nails chipping really weirdly. I’ve got this strange rash on my face. I’ve got rashes on my hands now,' and someone would say, 'Me too,' and that’s been the entire process.”
Having both contracted COVID-19 early on, Finley and Hanchette said test availability and confusion about the virus is why they believe some people aren’t taking it seriously enough.
“When you come up and say, 'Well, I had COVID. I have heart failure from this. I have cardiorenal syndrome that I go in and out of' – I’m very well-managed now – but it’s a slap in the face [that] there are people out there that will say this doesn’t exist,” Hanchette said.
It’s a nightmare, according to Hanchette, but one that's "manageable."
The women now have a mission to help others be seen and validated.
“The No. 1 thing is not being taken seriously by their physicians,” Finley said. “Some of them, even their families don’t believe them.”
Hanchette said it's "life or death."
Both believe not enough people are taking the virus seriously, but if they saw the physical pain it brings, they might.
“It matters because that leads to treatment," Finley said.
Even among the bad, Hanchette said she is grateful to wake up every day.
“I’m grateful that I am here to be able to deal with this today because death is permanent,” she said.