Confessions of a Covid Long-Hauler
by: Nita Jain
April 7th, 2020 is a day which will forever live in infamy in my memory. It all began inconspicuously enough in early April. After taking a solitary stroll one afternoon, I developed a sore throat, joint pain in my knees, and weakness in my upper body. For several weeks prior, I had been experiencing debilitating fatigue and frequent shortness of breath.
Initially, I chalked up my symptoms to allergies and possible anemia.
On Good Friday, the breathing trouble escalated drastically to the point where I felt like I was suffocating. My lungs seemed to be ballooning like air bags and then collapsing under the pressure. The heaviness in my lower chest made me feel like my alveolar sacs had been replaced with bags of marbles. I felt as though a giant block of ice had filled the space in my pleural cavity where my lungs used to be.
Saturday was accompanied by the onset of fever and profuse perspiration from my forehead, neck, and back. By Sunday afternoon, my breathing had turned to wheezing, and the unrelenting, excruciating chest pain became unbearable. Tears silently streamed down my face as my breathing continued to shallow. I could feel the air exchange in my lungs becoming more inefficient with each passing breath and seemed to be spiraling into acute respiratory distress.
For so many long haulers like myself, the BC era refers to the time ‘before COVID,’ a simpler time. When the Black Death first ravaged Italy, it spread quickly, but cities soon developed countermeasures and came up with the idea of “quarantine” — the word originally comes from the Medieval Italian word for “forty,” quaranta, because the period of isolation was forty days.
Unfortunately for me, my battle with COVID was not a short one. Well over 10 quaranta would transpire before I regained the slightest sense of normalcy. On the night of Monday, April 20th, 2020, COVID-19 dealt me another swift, hard blow and reeled me back into cowering submission.
I once again began experiencing a crushing heaviness in my lungs, severe chest pain, nausea, loss of motor control. Within seconds, everything started to go black, and I felt as though I was about to breathe my last. It was like being choked and suffocated at the same time.
With each successive cycle, COVID-19 seemed to reemerge with even greater determination to take me. It was like being knocked to the ground and strangled by an invisible stranger.
I spent the remainder of my days barely breathing. The disease was like huge overlapping waves pushing up against a dam that I was constantly trying to fortify, always threatening to overwhelm my defenses and destroy all of cellular civilization at any given moment.
In accordance with its protean nature, around the five-week mark, COVID-19 began morphing from a primarily pulmonary disease into a neuropsychiatric one as well.
Over the months that followed, I had many complications including lung scarring, dysautonomia, tachycardia, kidney swelling, and GI inflammation that required surgery. COVID also caused a horrible depression, the depths of which is difficult to describe. Oftentimes, I felt as though I was already buried six feet under.
While in the midst of my own seemingly never-ending battle with COVID-19, reports began to emerge of a “long tail” form of the disease, first described by Paul Garner in the British Medical Journal through his own firsthand accounts. A month later, science journalist Ed Yong covered the plight of us “long haulers” in a piece written for The Atlantic:
Garner’s descriptions of his illness are similar to those of many long-haulers who have been taken less seriously. “It wasn’t like he wrote those posts in some arcane language that’s steeped in authority,” said Sarah Ramey, a musician and author in Washington, D.C. “If you took his words, put my name on them, and put them up on Medium, people would say, ‘Ugh, who is this person and what is she talking about?’”
The route of exposure remained a bit of a mystery. I had been isolating for well over a month when the pneumonia first set in. I hadn’t had any direct contact with healthcare workers, grocery store clerks, or delivery truck drivers. When I heard New York Governor Andrew Cuomo announce on May 6th that 66% of new hospital admissions in his state were people who had been sheltering at home, I started to think that my situation wasn’t all that unique. Almost 84% of hospitalized individuals had not been commuting to work via personal vehicles, car services, public transit or walking.
As the pandemic progressed, we learned that young people were not as protected from experiencing symptoms as had originally been assumed and that patients aged 20 to 44 comprised 20% of those in the ICU. Stories such as those of 25-year-old David Anzarouth, 26-year-old Fiona Lowenstein, 29-year-old Francis Wilson, and 30-year-old Ben Luderer reminded us that no one could be considered safe from this disease.
In the interest of transparency, I have a fairly complicated (a.k.a. unfortunate) medical history. While I have struggled with chronic illness for the past two decades, I don’t suffer from any of the conditions generally thought to predispose an individual to more severe COVID-19 complications, namely diabetes, heart disease, hypertension, cancer, metabolic syndrome, and conditions that affect the lungs such as asthma, emphysema, COPD, and cystic fibrosis.
My pre-existing conditions included Ehlers-Danlos syndrome (a connective tissue disorder that makes me prone to injury), small fiber neuropathy (which feels like system-wide electrocution), chronic cystitis (which causes 24/7 burning bladder pain and urgency), and mast cell activation syndrome (which causes severe reactions to countless food and environmental exposures).
The fireworks sounded like bombs going off outside the large white isolation tent on the eve of July 4th. I had just been triaged and was waiting to see the attending doctor. About fifteen minutes later, a male Indian nurse pulled back the curtain to swab me for SARS-CoV-2. It was the fourth time I had been subjected to the procedure.
After another twenty minutes, the curtain was pulled back once again, and a young blonde doctor entered. She remarked that I didn’t look like I was feeling well. Indeed, I struggled to breathe the entire ride over. She asked me what was going on, and I began to explain my sordid symptoms.
In the pandemic, the divide between the infected and unaffected looms large. Some battle for their lives in intensive care units while others go about their business as usual, almost impervious to the external threat lurking behind every corner looking to claim or at least maim its next victim.
For those afflicted with the long-haul, life looks very different. Will we ever walk without vertigo again? Will our hearts ever beat normally again? Will the brain fog ever clear?
I personally began isolating long before such recommendations became commonplace and nonetheless ended up horribly ill while so many contemporaries seemed to defy social distancing guidelines, downplay the risks, laugh in the face of danger, and still get off scotch-free. It all seemed out of proportion. Nothing made sense, not that it ever did.
If Shakespeare (whoever he was) ever decided to tell my life’s story, he would’ve probably written it as a tragedy — with a heaping teaspoon of humor thrown in for good measure.
Throughout my illness, I struggled with neuropsychiatric symptoms such as hallucinations, depression, and delirium though I dared not admit to these extra-pulmonary manifestations. In my experience, doing so served as grounds for further physical and psychological abuse.
The burden of my pre-existing conditions compounded the pain of my illness. As a young minority female, navigating healthcare had always been tricky. When I experienced any kind of weight loss, I was presumed to have an eating disorder. When I exhibited trouble breathing or rapid heart rate, my distress was dismissed as anxiety. When I had an atonic seizure, I was accused of faking it.
We often speak of our hearts hurting in metaphorical terms, but the myocardial damage from overuse adds another cruel, ironic layer of injury to our pain, like pouring salt and battery acid into an open wound, like a trauma that won’t heal, like a scar that never solidifies or shrinks.
At times, the tachycardia caused a racing pulse of up to 200bpm at rest. At other times, my pulse remained in the low 40s for several weeks. I was too weak to speak and could barely move. I would go to bed, expecting to fall asleep and simply not wake up. I had never been so certain of death and told myself that it was alright, that I had no regrets. I was so sure that I didn’t even cry.
Truthfully, I had lost my will to live. The end seemed more like a welcome reprieve. If I wasn’t able to find healing, maybe I could at least receive some peace. Upon waking in the morning, I distinctly recall the utter disappointment at having to face another day in such excruciating pain.
Each time, the length of time to wear the heart monitor increased: first a week, then fourteen days, then an entire month. The cardiac monitor always smelled as if it had been doused in a liter of pungent perfume, and no amount of rubbing alcohol or hydrogen peroxide could mask the scent.
The continuous hospitalizations and specialist visits offered no resolution to my suffering. Managing my disease had become a full-time job from which I wasn’t allowed to resign. No amount of prescription medications, lifestyle interventions, or n-of-1 experimentation offered relief. The situation seemed hopeless.
For me, COVID was not a “Netflix and chill” type of illness. It was the type of illness that brought me to my knees, left me in tears, and broke my spirit. It was the type of illness that had me contemplating the end and thinking of all the people I wouldn’t have a chance to say goodbye to. It was the type of illness that left me wondering which breath would be my last.
Breathing distress became my constant companion, my chest ached incessantly, and the burning chronic cystitis pain that I had come to know so well the past several years wouldn’t let me sleep more than an hour at a time. I was so weak that I went weeks without showering.
The violent vomiting and chills began anew any time I tried to reintroduce solid foods. During these episodes, even the weight of my clothes was too much to bear and made my abdominal pain even more excruciating. Paradoxically, the more I ate, the more I lost weight. I spent over 60 days in a state of metabolic acidosis while my hair fell out in clumps.
People often point to my story as a cautionary tale about what can happen if the threat of COVID is not taken seriously. I take issue with this characterization as someone who had been isolating long before the pandemic began. The narrative that medical misfortune is the result of moral deficiency erroneously places the blame on patients for circumstances out of their control.
Too often, our stories are politicized and stripped bare of their humanity, strewn upon the altar of public health warnings and advisories. But behind every story is a human being with hopes and dreams and fears. Behind every story is someone just like us.
Maybe misery really does love company, or maybe we find our common humanity in the sharing of these stories. Maybe through overcoming adversity, we also overcome the distance between us and bridge superficial class divides. After all, no one is immune to the throws of misfortune.
Perhaps that underlies the sentiment that Carl Sagan was trying to convey in Pale Blue Dot, that we all have responsibility to deal more kindly with one another and preserve and cherish the only home we’ve ever known.
That starts with creating a more inclusive society that acknowledges and accommodates dynamic disabilities and complex chronic illnesses such as long COVID. Until the unaffected are just as enraged as the afflicted, inequality will remain the order of the day.
We needn’t wait for public policy measures to be enacted. Change can start with a simple conversation with a neighbor, friend, or colleague. Change starts with us, the people.
