Long Covid is still here. I know – my life came to a stop because of it

Iam 30ft below the surface of the Blue Grotto, a crystalline diving hole in central Florida. Between the water’s embrace and the restriction of my wetsuit, my blood pressure finally stabilizes. The long, deep breaths I pull from my respirator keep my heart rate nice and low.

I feel lighter than I have since April 2022, when I first contracted long Covid. I feel childlike at the fact that I can do this at all – get scuba certified – when on land I’m often confined to a wheelchair or a walker.

But when I tuck my fins away for the day, reality crashes back down. I’m a 34-year-old woman who was forced to move back in with her parents, had no choice but to retire from her dream career as a literary agent and a lecturer at the University of Minnesota, and had to cash out her retirement savings to cover the medical expenses that keep her in a chokehold.

My bodily existence is unpleasant. I wake up every day so nauseated that even the smell of food can make me vomit. I have to stretch for an hour before I can fully move my body. If I don’t sleep for 10–12 hours, my brain and muscles will be too depleted to manage anything beyond the rote tasks of keeping me alive. When I push myself to socialize, fatigue steamrolls my body with flu-like symptoms – but my suicidal ideation blooms like a mushroom cloud when I sequester myself away.

Each month, I make the four-hour drive from Asheville, North Carolina, where I now live, to Chapel Hill, where I’m a patient in the rehabilitation clinic that was previously the university’s specified long Covid clinic. Federal research funding and coordination for the condition have been rolled back under the current Trump administration, complicating care for patients like me. After I check into my hotel, I nap for an additional four hours, working up the energy to sit down for a 10-minute shower. I can’t stand for that long, not in one place, not without fainting, seizing or becoming short-term paralyzed. Typically, it’ll be a combination of all three.

The unbearably tricky thing about the condition is that it’s the culmination of a million moving parts. Even though most Covid longhaulers will only ever exhibit a handful, there are more than 200 possible symptoms, and treating one often means off-balancing another. Once one internal system starts to dysregulate, the rest tend to fall out in suit. This domino effect is predictable, but that doesn’t make it easy to treat, prevent or even diagnose.