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I am 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.How many people are living a compromised life, but they don’t recognize why?Dr Michael OsterholmWhen I speak with Dr Michael Osterholm, director of the University of Minnesota’s center for infectious disease research and policy and appointee to Biden’s 2020 transition Covid-19 advisory board, I ask how he’s seen the landscape of long Covid change over the past few years. Though rates of infection are decreasing, primarily due to the effectiveness of getting vaccinated, he highlights the difficulty in collecting research on a disease that’s so societally charged, one people have been incentivized to distrust.“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.Partner with your body and … integrate some level of activity into your daily life so that your heart and your lungs do not deteriorateDr Lisa Sanders“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.This advice resonates strongly with my own case. When I first contracted long Covid, I was immediately accepted into the University of Minnesota’s long Covid clinic. For nine months, I was driven to the hospital three times a week to do low-level activity in the form of cardiac physical therapy. As much as my body will allow, I’ve stuck to that regimen every single day for the past four years. Six months before my trip to Florida, I added in buoyancy-assisted swimming. It doesn’t look like much – maybe two laps in a pool using a kickboard twice a week – but, as it turns out, diving doesn’t have to take much.As I speak with Osterholm and Sanders, I consider how much worse my case would be without the medical intervention I received early on. I consider how lucky I am that doctors saw my symptoms for what they were and started working with me right away, unlike so many others struggling with the same array of symptoms.As Osterholm put it, when thinking about managing a disease like long Covid, “it’s very, very important to look at your community in terms of what you can accomplish together.”Getting scuba certified was an achievement I could only accomplish with my medical and dive teams. Honestly, the only way I’m able to make it through each day is because I am surrounded by others – but isn’t that the way it should be? There is a way to live with long Covid – there is a way to dive with it – but no one gets there alone.
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