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Covid 'long-haul' symptoms leave survivors in emotional limbo. It's a familiar pain.

Like those of us living with chronic illness, thousands of Covid-19 survivors must now confront the unrelenting unknowing of what will happen next.
Illustration of woman standing in shadowed figure of herself.
There is a very American eagerness to resolve the suffering of chronic disease patients, long before any of us can process what we've lost.Cornelia Li / for NBC News

Over eight months in 2016, beginning shortly after I was diagnosed with Type 1 diabetes at age 32, I made several trips to a local emergency room. In the hours before my final visit, I'd sat alone in my studio apartment, haphazardly injecting insulin to get a numeric reading on my blood sugar monitor. Instead, I was only seeing the word "HIGH" in all caps. I was slurring when I arrived at the hospital front desk, stumbling through an explanation of how I'd been recently diagnosed and how I didn't know why I couldn't get my sugar levels to come down. They put me on a bed in the nurse's office to wait and drew a curtain around the space. The smell of lemon acid — of too much sugar in the blood — wafted off my skin. I closed my eyes.

For unknown thousands, surviving the coronavirus has evolved into an anticlimactic misery of managing its cough, fatigue and pain on a daily basis.

The attending physician at the ER didn't know why my sugar had spiked. My endocrinologist, the doctor managing my diabetes, didn't know, either. But I received a double-armed IV flush of insulin and fluids, and I was able to return home. I got into bed woozy and with a pounding headache and most of all a lonely sense of disappointment. It was 2 a.m., and I was going to be fine. I'd been temporarily hopeful that maybe something else would happen, that my diagnosis would become something else, something more meaningful. Instead, this, too, would pass. There was nothing catastrophic to attend to; the disease would simply remain the tiresome, unending nuisance that it was.

I first heard the term "long-haulers" — an all-too-friendly new phrase for Covid-19 patients who are experiencing persistent disease symptoms months after onset of the virus — in August. For unknown thousands, surviving the virus has evolved into an anticlimactic misery of managing its cough, its fatigue and its pain on a daily basis. There is no precedent for how long the symptoms may last or whether they are consistent with a grimmer, separate reality — a new kind of chronic disease, birthed from the remains of the original illness.

Hearing about these cases reminded me of the well-intentioned acquaintances who'd been so chipper when I'd talked about diabetes in 2016: "You'll learn to manage, I promise!" There is a pervasive American cultural eagerness to resolve the suffering of a chronic disease patient, long before any of us can process what we've lost.

Recently, I asked my doctor whether he thought I'd develop another immune system problem in the near future. He chuckled, kindly. Type 1 diabetes was not my first autoimmune disease. In 2014, I was diagnosed with the thyroid condition Grave's disease. In 2019, it was a type of inflammatory arthritis called ankylosing spondylitis.

In early April, weeks after Covid-19 had officially been declared a pandemic and the U.S. to be in a national emergency, I wandered outside for a walk. I made it a dozen feet before I doubled over. For several moments, I couldn't breathe. After a few silent beats, I heard the air come back, in loud rasping clutches, like cars passing in a tunnel. I began to cough. My chest hurt. I was sweating. "I have sudden-onset coronavirus," I declared internally and then out loud to my concerned partner.

On the drive to an urgent care center, I leaned back in the car seat and felt an odd flood of relief. I had the virus; it had caught me.

On the drive to an urgent care center, I leaned back in the car seat and felt an odd flood of relief. I had the virus; it had caught me. And now that I had it, I didn't have to work so hard guessing what would happen if I did. Unfortunately, according to the nasal swab I got later that day, I did not, in fact, have the coronavirus.

A week later, I was diagnosed with adult-onset asthma.

Asthma was simpler than the others. I learned the basic triggers for an attack. I was soothed by the regularity of using my new inhaler at the same time every morning. I was reminded that asthma is ancient; Covid-19 is not.

For a long time after I was diagnosed with my first disease, I wanted to read about what it was like living with the specific condition. I found the relevant literature devoid of the sadness and yearning I was feeling. Most of the books were aspirational; recommended bloggers looked as though they'd been sitting in front of a wind machine, in lotus position.

After the diabetes diagnosis, my desire to explore darker, more morbid territory intensified. Occasionally a celebrity would "open up" about a "battle" with a particular illness, and a memoir would follow, joining the glut of narratives in which illness is a vehicle for transformation. I found the story arcs overly reliant on epiphanies, healing and solutions to disease management. It was difficult to find illness writing with an unresolved sense of exploration.

The problem with talking about chronic illness is that most of the time you're talking about fatigue and diarrhea. With any number of chronic diseases, the patient begins the illness in the dark, fumbling through protracted bouts of insomnia or depression or nerve pain, until finally a lab comes back or an infection lasts too long and a diagnosis is pronounced. It is only after a diagnosis has been made that the appearance of vague symptoms — headaches, fatigue, nausea, anxiety — can be seen for what they inevitably mean.

I long for an understanding of why this peculiar sense of disappointment can feel so crushing. Life with Type 1 diabetes and arthritis and thyroid disease and asthma is not a tragedy but often a series of uncomfortable, annoying, ever-changing adjustments and disappointments. There is rarely freedom to talk about the particular kind of guilt-ridden grief that comes with it.

And I imagine that some Covid-19 survivors living with the long-term effects of the virus are trapped in a similar emotional limbo. They have been spared the virus's most tragic outcome and yet now live with an unrelenting unknowing of what will happen next. There is a loss of identity with this kind of diagnosis. Suddenly you are a different person, belied by a nearly identical appearance to who you were the day before. It is painful. This pain is different from the kind derived from the lives, and livelihoods, lost to illness — but it hurts nonetheless.

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