Submerged 30 feet below the shimmering surface of the Blue Grotto in central Florida, I find solace. Encased in the embrace of the water and the snug fit of my wetsuit, my blood pressure finally settles into a calm rhythm. Deep, steady breaths from my respirator help maintain a low heart rate, offering a respite from the turmoil above.

In these moments, I feel unburdened, a stark contrast to my life on land. It’s almost miraculous that I can pursue scuba certification, considering that since April 2022, when long Covid first took hold, I’ve often relied on a wheelchair or walker for mobility.

But once I emerge from the water, the weight of reality returns with force. At 34, I’ve had to move back in with my parents, leave behind a cherished career as a literary agent and lecturer at the University of Minnesota, and deplete my retirement savings to manage overwhelming medical bills.

My daily existence is fraught with discomfort. Mornings greet me with such nausea that the mere scent of food can trigger vomiting. An hour of stretching is required before I can move freely. Without 10 to 12 hours of sleep, my brain and muscles struggle to perform even basic survival tasks. Social interactions leave me drained, replicating flu-like symptoms, yet isolation brings a haunting cloud of suicidal thoughts.

Every month, I undertake a four-hour journey from Asheville, North Carolina, to Chapel Hill, to visit the rehabilitation clinic that was once dedicated to long Covid patients. Changes in federal research funding and coordination under the current Trump administration have made accessing care increasingly difficult. Upon arrival, I often require a four-hour nap just to muster the energy for a brief 10-minute shower, as standing still can lead to fainting, seizures, or short-term paralysis—often all three.

The complexity of long Covid lies in its myriad symptoms—over 200 identified—that behave like a chaotic domino effect. Even though most sufferers experience only a few, addressing one symptom can destabilize another. Once one system falters, others tend to follow suit, making the condition challenging to treat, prevent, or even diagnose effectively.

When 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.

“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.