Living with Long Covid: A Personal Journey

I find myself 30 feet beneath the surface of the Blue Grotto, a stunning diving spot in central Florida. Here, embraced by the water and snug in my wetsuit, my blood pressure starts to even out. The long, deep breaths I take from my respirator keep my heart rate calm.

For the first time since April 2022, when I developed long Covid, I feel lighter. It’s almost childlike, this ability to scuba dive, especially when on land I often rely on a wheelchair or walker.

Yet, when I pack away my fins, reality floods back in. I’m a 34-year-old woman who had to return to her parents’ home, forced to give up my career as a literary agent and lecturer at the University of Minnesota. I’ve even drawn from my retirement savings to cover relentless medical costs.

Living in my body is often uncomfortable. Every morning, I wake up so nauseous that even the smell of food can trigger vomiting. It takes about an hour of stretching before I can truly move. If I don’t get 10 to 12 hours of sleep, my brain and muscles feel too drained for anything beyond basic survival tasks. When I try to socialize, I’m swept away by fatigue, feeling flu-like symptoms—but seclusion brings its own pain, often manifesting as dark thoughts.

Every month, I drive four hours from Asheville, North Carolina, to Chapel Hill for appointments at a rehab clinic once designated for long Covid patients. The current administration has significantly cut federal funding for Covid-related research, complicating care for patients like me. After checking into my hotel, I typically nap for four more hours, just to muster the energy for a brief shower. I can’t stand for long without feeling faint, seizing, or temporarily paralyzed. Usually, I experience a mix of all three.

The challenge with long Covid is that it involves countless intertwined symptoms. While most longhaulers experience only a few, there are over 200 potential symptoms, and addressing one can often exacerbate another. When one system falters, others can quickly follow suit. It’s a predictable domino effect that makes treatment—and even diagnosis—quite difficult.

How many people are living a compromised life, but they don’t recognize why?

When I talked to Dr. Michael Osterholm, director at the University of Minnesota’s Center for Infectious Disease Research and Policy and a member of Biden’s Covid-19 advisory team, I asked about the evolving landscape of long Covid. Even though reports indicate that infection rates are dropping, mainly due to vaccination efforts, he pointed out the complexities in gathering research on an issue so heavily politicized.

“How much of [long Covid] has actually disappeared due to recovery? How much has just been pushed aside as people try to move on?” he pondered. “And how many don’t even realize they have it?”

He stressed that one of the major hurdles for long Covid patients is staying informed in a climate rife with misinformation and fearmongering.

“Also, there’s this mental health aspect,” he added. “Chronic health issues can lead individuals to wonder: is this all in my head?”

As resources for studying the disease dwindle instead of expand, the notion that long Covid is minor is only reinforced, which can make many doubt their own experiences.

From his broader perspective, Osterholm contrasts with Dr. Lisa Sanders, medical director at Yale’s long Covid care center, who engages with patients on a personal level.

She has good news: despite some patients struggling to pinpoint their long Covid symptoms, the medical community is acutely aware of them. Now, it generally doesn’t take long for doctors and patients to start the systematic treatment of symptoms, which often involves various specialists because long Covid can impact multiple systems. Treating it can be a long journey, which is why early intervention is crucial. For some, long Covid doesn’t just fade away; it cements itself.

Partner with your body and … integrate some level of activity into your daily life so that your heart and your lungs do not deteriorate.

“Long Covid can lead to severe deconditioning,” Sanders explains. Some folks might find themselves with ME/CFS, a debilitating type of chronic fatigue syndrome. Others could develop symptoms like Postural Orthostatic Tachycardia Syndrome (POTS), where the heart rate spikes when standing, possibly leading to fainting. In my case, I have a mix of symptoms from all the mentioned conditions.

“A lot of my patients become deconditioned because they’ve learned that exerting themselves leads to feeling worse,” she says.

Ironically, being less active only worsens their limitations, creating a vicious cycle of decline.

So what’s the path for long Covid patients? Sanders advises them to find ways to engage with their bodies and incorporate at least some activity into their daily routines to prevent further deterioration of heart and lung function. This level often remains quite low; pushing beyond it risks an overwhelming surge of fatigue that can linger for days.

This advice resonates with my own experience. Right after getting long Covid, I started receiving care at the University of Minnesota’s long Covid clinic. For nine months, I attended three sessions a week of low-level activity, specifically cardiac rehab. For the past four years, I’ve kept up with that regimen to the best of my ability. Six months before my Florida trip, I even added buoyancy-assisted swimming, which, while it may sound minimal—just a couple of laps in a pool using a kickboard—made diving possible.

Reflecting on my discussions with Osterholm and Sanders, I can’t help but feel gratitude. The early medical intervention I received has made an enormous difference. I consider how fortunate I was for doctors to recognize my symptoms early, as so many others suffer in silence.

As Osterholm wisely noted, regarding the management of long Covid, “it’s essential to look at what your community can achieve together.”

Getting my scuba certification was a feat I could only manage with the support of both my medical team and dive instructors. Honestly, the only reason I can navigate each day is due to the solidarity of others—and isn’t that how it should be? There’s a way to coexist with long Covid, a way to dive amidst it, but that journey isn’t one to take alone.