Long Covid is transforming lives. As one person puts it, “The virus took my life but it didn’t kill me.”

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Before catching Covid in December 2020, Adriana Patino’s daily routine involved waking up at 4 a.m. and heading to a pool in Vancouver where she trained as a competitive swimmer. She worked out twice a day, along with managing a full-time job.

Now, she told CTV News, she struggles just to leave her home:

I have neurological damage to the extent that my brain can’t take the stimulation of just being outside. I’ve made it up to 10 minutes [before] I have to go back inside and just rest for a few hours.

Patino is one of over a million Canadians and millions of Americans who suffer from long Covid, a debilitating sytemic condition whose most common symptoms are chronic fatigue and brain fog – you feel as if you were concussed or drugged, impairing your ability to think, focus, and remember, where everyday tasks such as getting dressed, shopping or making meals can overhwelm.

Crucially, once you contract long Covid there’s often no end in sight (Patino’s had it for over 2 yrs), there’s no known cure, and you can’t predict who will get it, says physician-scientist Eric Topol, who runs the Scripps Research Institute in La Jolla, California:

Being young and healthy doesn’t protect you. I haven’t had COVID, and I don’t want to get COVID. I’m an older person, but I’m not as afraid of dying from it or even of the hospitalization as much as I am of getting long COVID because it’s unpredictable. 

It chiefly affects people with mild to moderate COVID. People in their 30s and 40s are the group that are showing up with these protracted symptoms. They can be quite debilitating. There’s only one surefire way of preventing it, which is not getting infected. The vaccine and boosters provide some protection, but it’s not entirely clear [how much]. But there is some protection, and that’s another reason to stay up with vaccines and boosters.

And those with long Covid are having to fend for themselves. Because it has such a wide range of symptoms extending well beyond the lungs – to damage to the heart, intestines, kidneys and, especially, to the brain (e.g. decreased brain volume) – it presents differently from person to person. As such, there’s no specific list of symptoms that yield a diagnosis and so you can find yourself confronted by family, friends, and even doctors who won’t take you seriously: “I’ve been told it’s all in my head [and you’re] not doing enough to get better,” said one patient who’s had long Covid since January.

That’s why Adriana Patino says, “I made it a personal mission to be as loud as I possibly can. Having a support group of people who . . . understand the struggles that you’re having are absolutely essential because for a lot of us, our own family members don’t believe us.”

Eventually, we will contain the virus, says Eric Topol, but its legacy will be profound:

Well, unfortunately, the sobering reality is that we’re going to have millions of people who are still, in one way or another, having these enduring, very troublesome symptoms.

In other words, millions of people with a different state of the brain that results in an altered self – a physically and mentally different person – perhaps permanently, compromising more than just everyday tasks, but those things in life we hold most dear, especially relationships.

That’s what Adriana Patino is telling us when she says, “My whole day is managing my symptoms, I have to plan things way ahead. This virus took my life but it didn’t kill me.”

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