At a recent Senate hearing on long COVID, Rachel Beale took to the stage and shared her experience managing her symptoms for the past three years. “Long COVID has affected every part of my life,” said the Virginia resident. “I wake up every day feeling tired, nauseous and dizzy. I immediately start planning when I can lay down again.”
Beale is far from alone.
Many of her experiences have been echoed by others dealing with long COVID. It’s a constellation of debilitating symptoms that range from brain fog and intense physical fatigue to depression and anxiety. Many people have lost months or years to this illness and describe extreme frustration at the lack of answers.
Doctors, too, feel unmoored by the lack of answers. “You do sort of feel like you’re out in the wilderness,” says Rasika Karnik, the medical director of UChicago Medicine’s post-COVID. “It’s hard to look a patient in the eyes and say ‘we’re not quite sure yet’ and to keep repeating that.”
There are currently no validated treatments for long COVID. There is not a widely established biomarker that can be used to diagnose it. Care clinics are hard to get into — and even if you do get in, most scientists believe this isn’t just one illness in the first place.