One Year of COVID-19 Long-Hauling: A Beginning with a Middle and No End?
March 19, 2021 marks my one-year anniversary of long-hauling with COVID-19.
ONE YEAR. Twelve months. 52 weeks. 365 days. 8760 hours. 525,600 minutes. 31,536,000 seconds. But who’s counting?
Long-hauling with COVID-19 is a ruthless, full-body experience that does not play. What a harsh, unholy trip it’s been.
I remember the end of April 2020, when six weeks of long-hauling seemed like an eternity. In the before times, I rarely got sick because I was lucky like that. I took my health for granted and abused it recklessly with overwork and stress and alcohol, daring it to fail me. And then it did, with the help of a vile, unsparing virus.
I remember the part where counting my illness in days made sense. But as the days kept piling up — 60, 90, 120 — I had to stop counting. Tallying each new day only added to the weight and the heaviness of it all.
Now, only two time categories make sense: beginning and limbo (a.k.a. hell and purgatory). The jury’s still out on the ending. I do count myself lucky and privileged that my ending was not death, as it has been for 537,714 people in the U.S. (as of 3/16/21). From that perspective, remaining in limbo is a gift, but there’s a healthy dose of curse mixed in with this blessing.
The Beginning: A Flaming Hell
The beginning of my SARS-CoV-2 infection was merciless. I had an intense burning pain in my chest, throat, and sinuses; shortness of breath; tachycardia; body aches; daily fevers; headaches; and extreme fatigue. Not for days but for weeks (that turned into months). If I got up for an hour or exerted in any way, I’d be laid up for days. Walking seemed too hard, and stairs impossible. The pain was relentless and kept me in tears. My symptom diary from that time reads like this: I feel exhausted to my core… everything hurts…I’m completely depleted…every cell in my body is spent and screaming…f*ck COVID-19…make it stop.”
A few months in, my peripheral nerves started demyelinating, and the burning pain worked its way to my legs and feet. I had balance issues and walked like a drunk toddler. Parts of my left foot went numb (and remain numb to this day), and the virus invaded and jumbled my brain. It was hard to concentrate, remember basic things (like how many weeks were in a month), and do simple calculations. I would get lost trying to go places I’d been a thousand times before. Cognitive work drained me, made my head ache, and took five times longer than usual. This deeply unsettled me since my livelihood depends on my ability to think in a clear, unfettered, and complex way.
It was like living the Pixies song: “Your head will collapse / But there’s nothing in it / And you’ll ask yourself / Where is my mind? / Where is my mind? / Wherrrrre is my mind?”
The Middle: An Everlasting Limbo
Long-hauling with COVID-19 feels like stumbling around on repeat trying to find the exit without ever having any luck. I’m no longer acutely sick, but I can’t find my way back to health. My ongoing symptoms are headaches, cognitive deficits, tinnitus, hearing loss, peripheral neuropathy, fatigue, new food sensitivities and rashes, and body temperature/breathing regulation problems. I’m in this liminal space, feeling like my body is trying its best to dust this plague but not quite able to get there. Stuck in a limbo that keeps on keeping on, with no apparent end.
Throughout this everlasting middle, early long-haulers, especially those of us who could not get tested when we first got sick, became accustomed to being dismissed by doctors. We suffered greatly from their “if you’re not hospitalized or dead, then you’re fine” mentality of dealing with COVID-19. For the first 2.5 months of my illness, my primary care physician’s main offering (via virtual appointments) was: It’s probably not COVID-19, but even if it is, you just need to get rest and fluids and go to the ER if you have trouble breathing. Months later, after I began to see specialists, I heard: It’s anxiety. It’s reflux. That’s outside my domain. There’s nothing more I can do for you. Maybe if you stopped thinking that something was wrong, you’d feel better.
But the problem was not in how I framed my experience. The problem came from being in an inaugural class of COVID-19 long-haulers that crashed into a siloed and overspecialized medical community, one largely not equipped to understand or help us, despite over a century of documented post-viral syndromes and decades of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) advocacy. What we needed was someone putting the pieces together and thinking systemically about our illness. Instead, we mostly got doctors who continued operations in their pre-COVID-19 reality without a genuine curiosity to learn about Long Covid, without insight that their current understandings and practices were insufficient to address this new beast of a disease. On multiple occasions, doctors who understood very little about COVID-19 long-hauling admonished me for reading every relevant thing I could find and trying to sort this out on my own. They said: Those are lay theories, anecdotes. That is not the word of the established medical community. But what did this community have to offer us?
My more generous self understood that no one quite knew what to make of SARS-CoV-2 and that early attention had to go to COVID-19 patients who were in the most critical need. Even so, the result was that many long-haulers fell through the cracks, without receiving proper attention or treatment, while we waited for the medical understandings to catch up.
In the meantime, we got inventive. We looked for guidance in atypical places. We banded together in support groups, shared our experiences, and helped each other. It was not until June 2020 when I found my primary support group (Long Haul COVID Fighters) and read Ed Yong’s article in The Atlantic called “COVID-19 Can Last for Several Months” that things began to click into place. Yong’s article spoke to me, especially this: “As the pandemic continues, long-haulers are navigating a landscape of uncertainty and fear with a map whose landmarks don’t reflect their surroundings.” I began to realize that there were thousands of people like me out there. I began to make friends with fellow long-haulers who spoke my language. I began to encounter experts through my support groups who took long-haulers and our questions and plight seriously. It was a welcome awakening.
There were two experts in particular — Dr. David Putrino at the Mt. Sinai Center for Post-COVID Care and Dr. Noah Greenspan at the Pulmonary Wellness Foundation, both in NYC — who caught on early and began doing work in the trenches with long-haulers and long-haul support groups to identify and shorten the long haul. They realized that there was no magical treatment algorithm and that cracking the long-haul code required reimagining standard medical practice and care. This early work helped me qualify for short-term disability leave (after months of wrangling) when I desperately needed it.
In time, more post-covid clinics opened their doors, and I cried from relief when GW started their Covid Recovery Clinic in D.C. in my eighth month of long-hauling. More recently, it has been encouraging to see new organizations, such as the COVID-19 Longhauler Advocacy Project and the Long COVID Alliance, spreading Long Covid awareness and advocating for resources, research, and legislation to support and protect long-haulers.
Over time, I’m finding strategies that keep me moving in the right direction. Breathwork. Physical Therapy. Qi Gong. Acupuncture. As I wait and wait and wait for the established medical community to catch up. The good news is that I’m now at about 55% of my pre-Covid energy levels, compared to 10% in the first few months. I do seem to have flipped the “one step forward, two steps back” script to one of slow, snail-like progress. But nonlinear recovery is the cruel reality of this plague (I had a major relapse in December 2020), and learning to ride that rollercoaster is part of the deal.
Returning to work after my leave has thrown me for a loop, and I’m focusing most of my energy on making it through each work day and rehabilitating my sad, but thankfully cooperating, body. Some days aren’t so bad, and some days I fall over. Pacing myself is key. I have to work in small, frequent doses so the piles don’t pile too high. When I push too hard, the headaches, burning pain, and fever kick into high gear. My body gives me very clear guidance on what works and what doesn’t, which I appreciate.
The End?
There are millions of long-haulers out there. This is not an exaggeration. If 10% of the 122 million worldwide COVID-19 cases to date become long-haulers (a conservative estimate), then there will be over 12 million of us, a staggering number that will only continue to grow.
Despite the ups and downs of this unholy ride, I’m doing better now than I was in the beginning. The brutality of this virus has prompted me to dispense with the nonessentials. I’m still wrangling with the psychology of it all. There’s so much good and bad mixed in together, and the good — stripping away BS/pretense, keeping work in the box where it belongs, learning how to be kind to myself, connecting more deeply with others — is so powerfully good and dependent on the bad that it’s difficult to complain. I’ve gotten nostalgic AF and gravitated more and more toward what sustains me. Love. Equity. Inclusion. Justice. Connection. Laughter. Music.
I am thankful for this progress and for the opportunity to continue making it. I am thankful to be alive and for the opportunity to give more of myself to this wayward and overwhelmed world. I recognize how fortunate I am, and I do count my blessings. I thank my lucky stars every day for the love that surrounds me. I am deeply grateful for my family, friends, home, job, and health care. I recognize how much more I would be struggling to regain my equilibrium without these supports, and I offer my solemn word out to the universe that I will never take them or my health for granted again.
Even though I tend toward pessimism by disposition, this Alabama Shakes song captures the hope I feel around the edges.
So, what happens next? Where do long-haulers go from here? How does this end? Does it end? Since no one really knows, I asked my Magic 8 Ball whether we were going to recover, and the all-knowing ball replied: “CANNOT PREDICT NOW.” Thanks for the honesty, most magic of balls. I suppose I’ll check back next year.
