Living with Long COVID: A Poem and Cartoon Tell the Story

Alyssa B.’s* students were concerned. Their Spanish professor was much less energetic than she was the semester before. She seemed to struggle to concentrate, sometimes asking them if what she was saying made sense. They wondered if she was wrestling with something in her personal life—maybe a family member had passed away?

Alyssa was indeed struggling—not with a death in the family, but with Long COVID. Even after repeated attempts, she was having trouble finding answers about the symptoms she was experiencing. At first, her primary care provider (PCP) chalked it up to a sinus infection. “But I’ve had sinus issues my entire life. It felt like so much more than that,” she says. “I felt this fatigue that I had never felt before. And I felt nauseous all the time.”

Over time, her symptoms not only worsened but she developed new ones, including insomnia, low oxygen levels, and tachycardia [heart rate over 100 beats per minute]. She returned to her PCP, who told her to lose weight. So, Alyssa began eating more mindfully. She added more exercise into her routine, even though she often felt too tired to do so. As a result of her efforts, she shed 25 pounds. But she still didn’t feel better. “Well, maybe you’re doing it wrong,” her PCP told her.

Eventually, Alyssa went to the Center for Post-COVID Care at Mount Sinai in New York City, where she finally felt heard. Through a combination of supplements, including vitamin B12 and omega 3; dietary changes, such as increasing her protein intake and reducing sugar; and exercise, she says she’s feeling better these days. For those suffering with post-exertional malaise (worsening symptoms following minor physical or mental exertion that had previously been tolerable) as a symptom, she adds, increasing exercise may not be feasible.

“I would like medical professionals to know that any kind of listening or empathy is really helpful, because a lot of people with Long COVID don’t feel like they’re being believed,” she says. “A lot of people—women, in particular—are being told they’re just overweight and anxious or depressed. We want to feel validated.”

Inspired by a March 2022 publication in the Journal of Poetry Therapy, which explores the role of poetry in fostering empathy in medical students and health care professionals, Alyssa has written a poem detailing her experiences with Long COVID:

UNTITLED

Some are

bedridden

since …. well, one forgets how long.

They call it brain fog, fatigue

Long COVID

They named it themselves

Brain fog—

when all of the words I learned

disappear, reappear

disappear again.

I stare at words

images

No sound, no signified,

Just signifiers that float

In mid-air

And my brain tries to grasp them

As it used to

It’s angry now that it can’t

It knows it is capable

It did it before

I sift through meanings.

—Signifieds to match the signifier It’s a lengthy process

I’m more efficient than this

Deep down,

I know I am.

But there’s a brake that was hit

A smog that was released

Clouding once sharp connections

Poisoning them,

Toxifying them

Destroying them.

Then tinnitus

The word sounds gentle

Like rain on a roof.

But you hear a loud tone

And I tried to find the frequency

Like one would tune an orchestra

I tried to tune my tinnitus

If I found the same frequency

Would it cancel?

I put on meditation music instead

And listened to my heartbeat

And its new strange patterns

—That speed up-tachy

—That slow down-brady

Tachy, brady, tachy, brady

Thump, thump, thump, thump

The drums of the orchestra run mad.

Body screaming for peace

Equilibrium

But it doesn’t know how to find it.

*Not her real name.

For another example of Long COVID-inspired creativity, check out this cartoon that was recently published in the Los Angeles Times: https://www.latimes.com/opinion/story/2024-06-06/op-comic-long-covid

Read other installments of Long COVID Dispatches here.

If you’d like to share your experience with Long COVID for possible use in this blog (under a pseudonym), write to us at: LongCovidDispatches@yale.edu. It may appear, space permitting, in a future post.

Information provided in Yale Medicine content is for general informational purposes only. It should never be used as a substitute for medical advice from your doctor or other qualified clinician. Always seek the individual advice of your health care provider for any questions you have regarding a medical condition.