“How much of [long Covid] has actually disappeared due to recovery?” Osterholm asks. “How much of it has disappeared because people just stopped talking about it, tried to move on with their lives? And then how many don’t even recognize what they have? How many people are living a compromised life, but they don’t recognize why?”
This, Osterholm says, is one of the biggest challenges of long Covid: keeping people informed, especially during a time of rampant fearmongering, misinformation and politicization of the human body.
“In some ways, [the difficulty in diagnosing long Covid is] also about the concept of mental health,” he continues. “Because long-term chronic compromise leaves one to begin to wonder: how much of this is in my head?”
And when resources are stripped back from studying a disease, instead of layered on, it reinforces the idea that the disease is mild enough to be ignored, making it even more likely that people will doubt what their body is telling them.
Where Osterholm observes the state of long Covid from a bird’s eye view, Dr Lisa Sanders, medical director of Yale’s long Covid multidisciplinary care center, spends her time one-on-one with patients.
The good news, she says, is that even if individuals are still struggling to recognize their long Covid symptoms, the medical field isn’t.
These days, it doesn’t typically take long before doctors and their patients are able to start the trial-and-error process of treating symptoms. It’s hard work, often requiring multiple specialists, because long Covid often affects multiple bodily systems. It’s potentially years-long work, which is why it’s so important to start as early as possible. Because for some patients, long Covid doesn’t resolve – it hardens.
"There is a serious degree of deconditioning that comes with long Covid,” Sanders says. For some patients, “Covid comes in, whacks you, and you’re left with ME/CFS,” a debilitating variation of chronic fatigue syndrome. Other patients are left with postural orthostatic tachycardia syndrome (POTS), a condition in which your heart rate accelerates when you stand, often leading to a loss of consciousness. Others develop orthostatic hypotension, in which your resting blood pressure falls frighteningly low. Some, like me, are left with a mix of all of the above.
“So a lot of times, the patients I see are reasonably deconditioned because they have learned that when they exert themselves, they feel bad,” Sanders says.
Unfortunately, being less active further increases a person’s limitations, which can in turn exacerbate symptoms, trapping them in a cycle of physical decline.
So what do long Covid patients do?
“My advice to them is to partner with your body and figure out how you can integrate some level of activity into your daily life so that your heart and your lungs do not deteriorate,” Sanders says. She emphasizes that some level is often a very low level, otherwise patients risk pushing into post-exertional malaise, an extreme exacerbation of fatigue symptoms that can last for up to a week.