Madeline Miller Writes About How Long Covid Derails

August 9, 2023

Long covid has derailed my life. Make no mistake: It could yours, too.

by Madeleine Miller

In 2019, I was in high gear. I had two young children, a busy social life, a book tour and a novel in progress. I spent my days racing between airports, juggling to-do lists and child care. Yes, I felt tired, but I come from a family of high-energy women. I was proud to be keeping the sacred flame of Productivity burning.

Then I got covid.

I didn’t know it was covid at the time. This was early February 2020, before the government was acknowledging SARS-CoV-2’s spread in the United States.

In the weeks after infection, my body went haywire. My ears rang. My heart would start galloping at random times. I developed violent new food allergies overnight. When I walked upstairs, I gasped alarmingly.

I reached out to doctors. One told me I was “deconditioned” and needed to exercise more. But my usual jog left me doubled over, and when I tried to lift weights, I ended up in the ER with chest pains and tachycardia. My tests were normal, which alarmed me further. How could they be normal? Every morning, I woke breathless, leaden, utterly depleted.

Worst of all, I couldn’t concentrate enough to compose sentences. Writing had been my haven since I was 6. Now, it was my family’s livelihood. I kept looking through my pre-covid novel drafts, desperately trying to prod my sticky, limp brain forward. But I was too tired to answer email, let alone grapple with my book.

When people asked how I was, I gave an airy answer. Inside, I was in a cold sweat. My whole future was dropping away. Looking at old photos, I was overwhelmed with grief and bitterness. I didn’t recognize myself. On my best days, I was 30 percent of that person.

I turned to the internet and discovered others with similar experiences. In fact, my symptoms were textbook — a textbook being written in real time by “first wavers” like me, comparing notes and giving our condition a name: long covid.

In those communities, everyone had stories like mine: life-altering symptoms, demoralizing doctor visits, loss of jobs, loss of identity. The virus can produce a bewildering buffet of long-term conditions, including cognitive impairment and cardiac failure, tinnitus, loss of taste, immune dysfunction, migraines and stroke, any one of which could tank quality of life.

For me, one of the worst was post-exertional malaise (PEM), a Victorian-sounding name for a very real and debilitating condition in which exertion causes your body to crash. In my new post-covid life, exertion could include washing dishes, carrying my children, even just talking with too much animation. Whenever I exceeded my invisible allowance, I would pay for it with hours, or days, of migraines and misery.

There was no more worshiping productivity. I gave my best hours to my children, but it was crushing to realize just how few hours there were. Nothing was more painful than hearing my kids delightedly laughing and being too sick to join them.

Doctors looked at me askance. They offered me antidepressants and pointed anecdotes about their friends who’d just had covid and were running marathons again.

I didn’t say I’d love to be able to run. I didn’t say what really made me depressed was dragging myself to appointments to be patronized. I didn’t say that post-viral illness was nothing new, nor was PEM — which for decades had been documented by people with myalgic encephalomyelitis/chronic fatigue syndrome — so if they didn’t know what I was talking about, they should stop sneering and get caught up. I was too sick for that, and too worried.

I began scouring medical journals the way I used to close-read ancient Greek poetry. I burned through horrifying amounts of money on vitamins and supplements. At night, my fears chased themselves. Would I ever get relief? Would I ever finish another book? Was long covid progressive?

Read the full story here.

Visit Madeline Miller’s Speaker Profile: