A catalogue of losses: what chronic fatigue took away from my life

On Friday, 14 December 2012, I would experience the sudden onset of an illness that, looking back almost a decade later, bears a powerful resemblance to the narratives of those suffering from long Covid.

That night, I had plans to meet a woman I was seeing. At the time, I was working as an adjunct English professor at a local college in Westchester, New York, commuting over the George Washington Bridge from my fourth-floor walkup in Hoboken, New Jersey, and trying to persuade distracted 19-year-olds to appreciate the black comedy and cryptic comeuppances of Flannery O’Connor. After walking back to my apartment from the gym, I showered and sprayed on cologne. But before I could leave, a wave of weakness and disorientation crashed over me. My balance became wobbly, and my stomach lurched forward and back. I staggered through my apartment as if it was the cabin of a boat heaving and pitching in a storm.

This weather, I was soon to find out, would never pass.

Over the next few hours, I threw up several times, and the malaise swept over my thoughts and rendered my movements slack and sluggish. While I still went out that night, I felt off – languid and feeble. It was a friend’s 25th birthday and she’d invited me to a downtown Hoboken bar. While everyone around me coagulated into one viscous organism, spinning to the music like a human carousel, I was stuck at half-speed, wandering the sloshy floors in a different sort of stupor.

But I was 26 years old, and my longstanding approach to illness – whether a cold, cough, virus, or stomach bug – was to ignore it and continue with my normal activities in a deluded gesture of masculine contempt. I assumed that, like all the previous maladies that had passed through my life – asthma attacks, walking pneumonia, chickenpox, influenza – this too would promptly bow out.

This weather, I was soon to find out, would never pass

When a week went by and I still felt lethargic, fatigued and mentally adrift, my nonchalance surrendered to a creeping wariness. It was December, though, and I was determined not to let this lingering illness ravage the holidays. On Christmas morning, back in the leafy Connecticut suburb where I grew up, I trudged out of my childhood bedroom cloaked in an oppressive torpor. The malaise was only thickening.

Throughout my 20s, I had been physically active to the point of extravagance. There were trips to the gym framed by the sunrise, intramural football games on cloddy high-school sports fields, yoga routines in my cramped bedroom, even wind sprints along a renovated pier that jutted out into the Hudson River.

Working out wasn’t just a way for me to stay healthy; it was more intimate and elevated, akin to a kind of religious ritual. Gyms, courts and fields were the places I went to achieve spiritual sublimation and emotional catharsis, plugging myself into something soothing, dynamic and primal.

Now, though, whenever I went for a run or played a game of pickup basketball, I felt foggy and weak for hours or even days, as if I’d been suddenly thrust into a bout with the flu. It grew unequivocally clear that almost all intensive activity was no longer an option for me. When classes started back up in January, I still wasn’t close to full strength.

Over the course of the semester, my symptoms evolved, assuming insidious new forms. While participating in a group grading session in my college’s cavernous brick rotunda, I was struck by a migraine so walloping I had to excuse myself for the day, leaving a pile of ungraded final exams and a circle of quizzical colleagues around my empty chair. I rushed down several wooden staircases, across campus and to my car gulping fumes of embarrassment. At bookstores, I’d kneel down to peruse the bottom row, and on standing up again I’d see black spots smattered with flickering stars. I was bone-weary all day. I’d toss restlessly in bed at night.

My body’s wiring was no longer responding to the switches that once controlled it. I was constantly short-circuiting, and no one could tell me why.

The Irish goodbyes from work became commonplace, and I vanished from my social life in a similar manner. I begged off birthdays, holiday parties and weekend trips, spending nearly half of my waking hours resting in bed. Once accustomed to going out weekly with friends to the boisterous bars that lined Hoboken’s main thoroughfare, now most of my leisure time was spent in my bedroom, reading. I simply didn’t have the energy or stamina to keep hold of my old life, and so it wrested free of my slackening grip, fluttering away into a cloud-smeared sky from which I started to doubt it would ever return.

I was forced to grapple with the merciless logic of life with a chronic illness

I racked up doctors’ visits with pathological tenacity, a speed-dater certain “the one” could be culled from masses of duds (an experience I’m sure many with long Covid find profoundly relatable). I first saw a general practitioner in Connecticut, who diagnosed me with bronchitis. Once it was clear that assessment was off the mark, I walked to an urgent care clinic in Hoboken, where a physician tested me for Epstein-Barr, the virus that causes mononucleosis.

When it came up positive, I felt as though some degree of coherence had been restored. The symptoms of mono largely matched what I was experiencing, and the virus’s enervating effects could persist for months.

For a while, I settled into the clipped, expectant rhythms of protracted convalescence. When the malaise, migraines, and muscle pain still hadn’t ebbed by the summer, I resumed my offensive to find a physician who could treat me. Appointments with internists, immunologists, virologists and other specialty clinicians yielded zero leads, and the gap between the symptoms I knew I was experiencing and the supposed expertise doctors were using to evaluate me was stretching into a vexing chasm.

Over the course of those first 12 months, I was forced to grapple with the merciless logic of life with a chronic illness – a logic that once or twice literally brought me to my knees. My condition revealed itself to be a mystifying labyrinth, a maze that always led me back to where I began: no better, and, if I was lucky, no worse.

While I held onto my job in the college’s graduate department, teaching became too physically exhausting and mentally depleting and I eventually stopped. My workdays were acts of endurance and concealment: first I would push my pain and exhaustion down to a place where nobody, including myself, could see them, and then – like an actor who’s mastered the lines and gestures for a play he silently resents – I would assume a brittle mask of healthful calm.

If my illness had any organizing principle during that year, it was a loose, zigzagging adherence to the stages of grief. Whether anybody else could see it or not, I had lost someone: my former, healthy self. Early on, a procession of sanguine doctors and my own friends and family assured me I would soon get better. For a long time, many doubted I had anything seriously wrong with me, and the steady accumulation of normal laboratory tests only bolstered that conviction. They helped lay denial’s groundwork for me.

•••

Over time, my denial – slipping the rope of the traditional “anger” stage of grief – shifted to bargaining. Just a few more months, I kept telling myself, and everything would return to normal. By the time I finished rewatching the entire series of The X-Files, I’d be recovered. If I can just get my hands on this one promising treatment, I silently insisted, it would cure me.

I read online articles, scanned message boards, and gleaned physician directories for anything that might nourish my flagging sense of hope. The list of ex-doctors and their failed treatment protocols piled up. My efforts began to feel like an unconvincing charade, one in which I played the roles of both the charlatan and his mark.

It slowly dawned on me that I might remain sick for years, possibly the rest of my life. It was behind this wrenching revelation anger waited. I watched as friends and peers went on with their lives – dating, socializing, getting promoted, getting engaged. People I thought I was close to treated the reality of my illness like a superfund site, some awkward, unsightly hazard best avoided in favor of lighter, less complicated fare.

A therapist I was seeing at the time told me that anger was like drinking the poison and expecting someone else to die

To address my baffling predicament, it seemed, was to acknowledge the frightening messiness of the human condition. This near-universal habit of evasiveness and avoidance confused and upset me. Did people simply not care about my suffering, about the grievous diminishment that had shrunk the borders of my life? The indifference I perceived in others eventually stirred something bitter and foul inside of me, an ugly indignation that kept itself concealed but grew larger with each passing month.

During one of our appointments, a therapist I was seeing at the time told me that anger was like drinking the poison and expecting someone else to die. I conceded her point while knowing, full well, what little it would do to dissuade me from swigging, again and again, from that black bottle. That poison coursed through my veins, replacing my flailing immune system with a sense of aggrievement that glowed like crackling red coals inside me. Anger was what I had, and I quietly put it to use – a stage as delusional as the preceding two, except draped in its own strange, addictive glamour. I’d been an angry kid, and now I was an angry adult. It was a rare through-line in an otherwise ruptured narrative.

•••

By the fall, my condition hadn’t improved in the slightest, and my recovery daydreams were rapidly losing their suspension of disbelief. Finally, in September 2013 – nine months after I’d first gotten sick – I visited a specialist in Manhattan who recognized the symptoms I carefully recounted in his examination room. After an hourlong appointment, he confirmed what I’d already guessed from my internet searches: I had chronic fatigue syndrome.

Combining fastidious research with the experience I now awoke to every day, I gradually learned how ruthless and perplexing chronic fatigue syndrome is for those who fall into its clutches. Symptoms include lethargy, fatigue, malaise, insomnia, muscle and joint pain, and memory and concentration problems. A strikingly similar constellation of symptoms would appear, years later, in those suffering from long Covid. In fact, many experts and sufferers believe that a certain, as-yet-unknown percentage of those with long Covid go on to develop chronic fatigue syndrome (also referred to as ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome).

Those living with CFS may struggle to hold on to their jobs, relationships, social lives, and independence. Some don’t have the energy or cognitive wherewithal to leave their homes, becoming housebound. Those suffering the worst become bedridden. While I’d eluded such frightening fates for the time being, I grew to understand that, with such an unpredictable, scarcely understood condition, the trajectory could hairpin quickly. A downward spiral might lurk behind next month’s – or next week’s – corner. Never slipping far from my mind, it was a stay of execution I did not take for granted.

After two years of coping, in 2015 I heard about a treatment that sought to infuse my immune system with healthy antibodies from other people’s blood. By that point I’d learned to navigate the medical field with a cold, even frosty pragmatism. I’d shuttled myself from one doctor to another, handling each with forceful diligence and a clinical detachment that reflected back their own. I saw through each protocol for as long as I needed to, and when the pills, injections, or supplements revealed their inefficacy, I’d move on to another.

Final appointments would be tense but also mordantly comic, like an episode from the kind of surrealist dramedy you might find on HBO or FX: physicians sat behind large cluttered desks, bumbling through futile defenses of their treatments as I looked on with indifference and a thin, caustic smile penciled over my face. They cost me hundreds, sometimes thousands of dollars and provided none of the relief that was promised – I had no place for niceties. I was aloof but also relentless, expecting nothing but pouring absolutely everything into another doctor, another treatment, another slender wisp of hope. It was a dichotomy that kept me safe from the whiplash of foiled expectations.

After enough time had gone by, I found myself forced to confront what two years of feverishly searching for a panacea had granted me a temporary deferment from: the fact that I would have to live, indefinitely, with this condition. Instead of furiously chasing down doctors, treatments, drugs, and the quixotic narratives of glittering recovery that bloomed out of them, I would need to sort through the rubble CFS had left, take what could be salvaged, and go out in search of the rest. All so I could rebuild my life.

There was no useful reason to draft a catalogue of all the losses. My diminishments, while largely invisible, were legion: the condition had ravaged my stamina, plundered my memory, and turned me into a glitchy simulacrum of my once-effusive self.

Had such a catalogue been composed, though, it would have looked something like this: I could no longer play football, basketball, baseball, or any other sports; run, bike, or exercise at the gym; fall asleep naturally; wake up feeling refreshed; go out for drinks; imbibe any alcohol without inducing devastating hangovers; use recreational drugs without triggering days of physical desolation; experience the heady cascade ushered by endorphins; feel the glorious surge of an adrenaline rush; feel “sharp this morning” or be “feeling good today”; manage on less than nine hours’ sleep; expend the energy required to teach literature and composition to yawning adolescents for multiple hours; consistently remember movie plots, grocery store lists, the week before last, or all manner of proper nouns; stay up late into the night without sabotaging my ability to function the following day; carry out math computations in my head; recall what it felt like to relate to the friends and family in my life; or participate in the world without the obfuscating screen of perpetual sickness.

These were my losses, and as I slowly, fearfully moved to a place where I understood that they would stay lost for a very long time – possibly forever – I found myself in a different sort of stage. It was not one I had seen in the capacious cottage industry of books, articles, essays, and blog posts that have proliferated out of Elizabeth Kübler-Ross’s original formation on grief.

Toward the end of my 20s, I began to feel that I was suspended between the person I was before I got sick and whatever person this catastrophe was going to change me into being. The tortuous path I’d long put out of my mind – the one landscaped with the heavy scenery of acceptance and adaptation, wisdom and growth – now lay before me. There was no other road to take.

The question I would have to ask myself, one that would persist long after the stages of grief quieted, was whether I wanted to treat this flawed doppelgänger with the same care I treated its predecessor with. My longing for the original model haunted me. The changeling in its place was for me to salvage or squander.

This is an edited excerpt from What doesn’t kill us makes us: who we become after tragedy and trauma by Mike Mariani, published by Ballantine Books, an imprint of Random House