Every morning, I wake up in my Brooklyn apartment, and for two seconds, I can remember the old me. The me without pain, the me with energy, the me who could do whatever she wanted.
Then I’m shoved back into my new reality. As I fully come into consciousness, I feel dizzy, faint and nauseated. Pain pulses throughout my body, and my limbs feel simultaneously as heavy as concrete and weak as jelly. It feels as if a machine were squeezing my skull, and extreme exhaustion overtakes me.
These sensations have been a daily occurrence, with few exceptions, for the past three years and nine months. In the morning my boyfriend will be the one making coffee for us. He will run all of our errands. He will cook and clean. He now does all the things I used to do, the things I can’t do anymore.
I live with what’s known as long Covid, an illness that has reshaped my life.
I’ve come to realize that “long Covid” is a deceptive term for a condition that can trigger a diverse swarm of debilitating symptoms with no end in sight. What I’ve experienced is in no way just a lingering cough or a few weeks of fatigue after an acute Covid infection.
I first got Covid in March 2020, just as New York City was going into lockdown. My case was mild. I was not hospitalized. Like many who got sick in those early days, I experienced what felt like a bad flu.
My doctors were confused when I wanted them to be alarmed. After many tests returned inconclusive results, they told me that I was probably just stressed and should take a break from work. Or I should try to push through and exercise. Or maybe I should start anti-anxiety meds.
A selection of medical documents Ms. Lupi has accumulated since she became sick in March 2020.
Despite getting my Covid boosters on schedule, being careful about potential exposure and wearing a mask in crowded spaces like the subway, in November 2022, I got Covid a third time. My symptoms became even worse, even more intense and entirely debilitating. Unrelenting chest tightness and tachycardia, dizziness while being upright, frequent nausea and headaches, systemic reactions to most foods, tinnitus, severe insomnia, a persistent feeling of being poisoned, blurry and double vision and exhaustion that would land me in bed with the lights off for days at a time.
Since “long Covid” is an umbrella term, definitions of which include people as debilitated as I am and people who have lingering fatigue or cough, it’s unclear how many people continue to be as sick as I have been. Recent research suggests that long Covid isn’t just one medical phenomenon but a condition with multiple subsets and over 200 recorded symptoms, including some that could be causing damage to multiple parts of the body at once.
Over 200 symptoms related to long Covid have been recorded in patients. Ms. Lupi has experienced 21, with many recurring daily.
I’m not a medical expert, but I’ve had to become one to make sense of my new reality. At work, I’m a graphic designer who creates data visualizations. I live and breathe data; it’s the filter I have to understand the world around me. My approach to data centers on its human qualities, reconnecting numbers to what they stand for: our imperfect and messy lives.
Images from some of Ms. Lupi’s recent work.
Data is a tool that helps me cope with life when I am scared and confused and looking for answers.
At the beginning of my illness, I started logging all of my symptoms. I tracked everything in a huge spreadsheet: my symptoms’ intensity, whether they came on suddenly or gradually, when new symptoms appeared, the medications and supplements I was taking, the treatments I was trying, what I did that day, if I felt stressed, what I ate and drank and scores of biometrics from my newly bought smartwatch.
The spreadsheet that Ms. Lupi has been using to track her long Covid symptoms, medications, diet, potential triggers and more. Some personal details have been redacted.
I thought that if I collected enough data, I would eventually figure out what was going wrong. But no matter how much data I collected or how many correlations I tried to draw, answers eluded me. Still, I couldn’t stop tracking. My spreadsheet was the only thing I could control in a life I no longer recognized.
Long Covid is a physical affliction, but chronic illness, stretching over months and years, has a way of picking apart your mind and breaking your heart. It is a constant deluge of pain that slowly strips you of everything you used to be by taking away everything you used to do — daily exercise, going out more nights than not, seeing friends, attending concerts, traveling the world and, eventually, laughter, smiles and the ability to imagine a future without harsh physical limits.
Even if my body, from the outside, resembles the old me, long Covid has rewritten my core personhood on a cellular level. I have been able to push myself to work at my desk most days (my job often feels like the only piece left of my old self), but I am never symptom-free, and I can see how this confuses people. This paradox is part of what makes treating this invisible illness, as researchers are starting to understand, so complex.
“The reason that patients are being minimized for so long is because it’s very, very clear that complex chronic illness doesn’t fit in this neat package of ‘Here’s an X-ray. You got a broken tibia,’” said David Putrino, the director of Mount Sinai’s center for complex chronic illness, who has been working with patients with long Covid since early in the pandemic.“What we are finally proving, though, is that categorically, stuff is going wrong in the bodies of these people.” As he has gained more experience with the condition, he’s stopped believing in the possibility of finding a single medical mechanism that would explain the full range of long Covid symptoms. “It doesn’t make sense to look for a single biomarker, given what these infection-triggered illnesses are doing to the body,” he said.
In the past three years, I have:
- Experienced and tracked more than 21 symptoms, consolidated here into 13 colored categories
- Seen 46 doctors at 233 doctor appointments,
- Had my blood drawn 59 times
- Done 12 X-rays, 15 M.R.I.s, four CT scans, one PET scan (some of them admittedly very beautiful to look at), a tilt table test, an electromyogram, a skin biopsy, a carotid ultrasound, microclot and neuroinflammation tests and more
- Been to the emergency room six times
- Participated in four research studies and one clinical trial
- Had 81 procedures done (injections, infusions, nerve ablations, immunotherapy) to try to reduce my symptoms
- Tried 63 medications and 95 types of supplements (some of which have been harmful)
- Tried several diets (no gluten, no carbs, low histamine, paleo-autoimmune, low glycemic index)
- Tried weekly physical therapy and acupuncture, osteopathic and chiropractic treatments, cranial sacral therapy, pain reprocessing psychotherapy and brain retraining, health coaching, cardiac rehab, lymphatic massages and more
- And spent tens of thousands of dollars on medical bills
- Every day is filled to the brim with appointments, meds, needles, bills and pain. The brushstrokes of my illness are suffocating.
In the past three years, I have:
Even at my lowest moments, I remind myself that I am incredibly fortunate. I have a job that allows me to work from home. I am privileged to be under the care of excellent doctors. And I have good health insurance (even though I’ve spent tens of thousands of dollars out of pocket on various diagnostics, treatments and medical appointments).
But not one day goes by — not one half-hour — that I do not feel sick. Always in the back of my mind is the fear that I will never again experience the uncomplicated, illness-free joy of the life I used to have.
This is a chronology of every day Ms. Lupi has been sick with long Covid, starting on March 10, 2020. Brushstrokes represent her symptoms. Symbols stand for doctor appointments, medical procedures, Covid reinfections and more.
Long Covid runs the show now. I know from experience that if I overdo it in any way, which can mean taking actions as small as sitting up for too long or trying to make the bed, I could make myself feel far worse, shrinking the tiny life I have left into something even smaller. At times, it feels as though this illness is punishing me for trying to live at all.
Every day, I try to accept that this is what my life is right now, that I should learn to live with the pain and my limitations and that I should rest more and more.
I am scared of not getting better. I am scared of getting worse.
I’m afraid to lose even more of myself than I already have. I am scared of losing my partner, who now lives a life dominated by my illness. Underneath it all, I’m afraid of not knowing.
Source: N.I.H.
Without proven medical solutions to treat these conditions, a formidable grass-roots community of long Covid patients has forged virtual friendships, sharing advice, stories and words of support in lively online groups. The only people I feel I can build relationships with nowadays are people with long Covid or other chronic conditions.
Along with patient-led initiatives, doctors and scientists across the globe are investigating possible root causes of long Covid. I have been lucky enough to participate in a few research studies, one of which is testing the blood of long Covid patients for anomalies like microclots and immune system activation, which are potential causes of some of my symptoms.
Magnified images of Ms. Lupi’s blood, captured by Brittany P. Boribong at Massachusetts General Hospital.
As patients, we can do only so much to accelerate the pace of this important research. “What is needed now are more high-risk, high-reward funding mechanisms,” said Dr. Amy Proal, a microbiologist and the president of the PolyBio Research Foundation, which studies long Covid, “to move things more quickly, because government grants can take up to two years to get, and that’s not going to work.”
We don’t have time. The longer a person’s body is in a state of chronic illness, the harder it can be to recover fully.
For many, the pandemic seems over. But the threat is not over. Although vaccination and prior Covid exposure lessen the risk, people can still get long Covid, even a severe, debilitating version like mine.
As for me, my symptoms — my brushstrokes — are more intense than ever before.
The recent days on my data canvas are thick with color. Much of the slight progress I made this summer is gone, and many of my fears have intensified. I do not know what is going to happen next.
But I can hope.
I hope one day I will be able to take walks again, snowboard, sit with my friends and eat at a restaurant, travel to my home country, be pain-free and simply enjoy a day in the sun without symptoms or fear. I hope one day I will get back to the person I used to be.
Ms. Lupi asked members of her long Covid community to share their hopes, given the prompt: “I hope I will be able to _____ again.” Hundreds of people responded.
We are living with our long Covid brushstrokes in our own ways.
But we dream of living life as a blank canvas once again.
