As I went to bed on New Year’s Day, I sighed to myself, “I just don’t know ...” My fiancé Konstantin, who I thought was fast asleep, lifted his head and asked what I meant. Embarrassed to have been caught in a solipsistic moment, I quietly finished the thought, “... if I will ever get better.”
COVID-19 entered my home a year ago today when my 16-year-old daughter Molly first developed the tell-tale cough. By March 17, 2020, my symptoms had begun. Molly recovered almost entirely after three weeks, but I’m still sick, and that makes me a COVID long hauler. Jan. 1, 2021, was a particularly difficult day for me: My joint and muscle pain, which had been escalating since summer, reached a level of agony and was coupled with intermittent tachycardia and shortness of breath, digestive problems, migraine, and overwhelming fatigue.
As bad as the day was, I knew the night would be worse. Because the nights have always been worse for me, and many others, since the coronavirus hit us. Once I lie down, the ringing in my ears begins, my arms throb with pain, and I sleep in fits and starts for two, three, maybe four hours before waking, almost always with a migraine.
So, when Dr. Anthony Fauci officially identified the post-viral syndrome as post-acute sequelae of SARS-CoV-2 (PASC) on Feb. 24 at a White House COVID-19 Response Team press briefing and announced new research initiatives ― followed the next day by a policy brief from the World Health Organization on long COVID ― I felt a profound wave of hope. The medical attention that long haulers have been seeking for months is finally arriving.
Though my private lapse into despair on New Year’s Day was temporary, it has taken a great deal of effort to maintain optimism nearly a year into my long COVID journey. And I am not alone. A recent study published in JAMA Network Open, which Dr. Fauci referenced, indicates that 30% of COVID patients are symptomatic up to nine months after infection. That is a staggering number of people. And it is a crushing length of time to be sick with an illness that is still not fully understood.
A study published in December by the Body Politic Patient-Led Research Group estimated that COVID long haulers have experienced more than 200 symptoms across multiple organ systems, many for up to seven months.
I have experienced approximately 100 symptoms myself, ranging from the notorious chest pressure and hypoxia, to tingling and numbness in my arms and legs, to muscle and joint pain, to brain fog and impaired verbal recall, to mental and physical exhaustion, to insomnia and nightmares. Each day, getting up, showered and dressed is a painful hourslong process that leaves me short of breath and lightheaded. By late afternoon, I need a nap and rarely have the energy to prepare dinner. Although my life is no longer in danger, the inflammation that seems to be raging throughout my body will not quit.
When I became infected with the coronavirus last March, I never dreamed that I would still be sick a year later.
With more than 500,000 deaths caused by COVID in the United States already, I am grateful that I’m still here. However, for the first wave of long haulers, our COVID anniversaries bring a growing concern that we may never fully recover. For each step forward, we have been pummeled by relapses and new symptoms. Indeed, each month the goal posts seem to move farther down the field.
We have felt like pioneers, blazing a trail through our avalanche of symptoms when testing, hospital beds and treatments were all in short supply. We shared information and formed online support communities as we waited and hoped for a return to health. As sick as I was at one point ― on strict bed rest for nearly two months ― I felt almost energized by the commitment my health care team brought to the puzzle of my prolonged illness. My primary care doctor secured potentially life-saving supplemental oxygen for home use for me and coordinated care with a variety of colleagues. I could text my nurse practitioner in an emergency and I had a medical caseworker who called to check on me each day for weeks.
In May, my pulmonologist, months ahead of the curve, identified me as among the “walking wounded” who would have long-lasting symptoms. He referred me to Dr. Noah Greenspan and physical therapist Marion Mackles of the Pulmonary Wellness Foundation in New York for online pulmonary rehabilitation. For nearly a year, they have devoted themselves fully to working with long haulers, listening carefully to our stories, consulting with other specialists, and developing individualized rehab protocols that respect the heterogeneity of symptoms within the long COVID population. In astonishing and early recognition of our needs, they revamped their entire practice: redesigning a boot camp originally created primarily for elderly people with cardiopulmonary disease, leading weekly support groups, and holding webinars with multidisciplinary experts, all online and free of charge.
In the fall, Dr. Greenspan invited me to continue my rehabilitation on site. Through a methodical approach that allows my body ― which is suffering from dysautonomia and postural orthostatic tachycardia syndrome (POTS) ― ample time to adjust to changes in position and pace, I have built up the ability to walk on the treadmill at increased speeds and inclines, with shorter recovery times and without relapse. Last week, I was retested on the treadmill and had a 96% improvement in exercise capacity over my initial test in November. I am nowhere near my pre-COVID condition and I have an array of other distressing symptoms, but my autonomic system is being retrained.
Long haulers often feel invisible and ignored. And we are not OK. Many patients share their symptoms and struggles with strangers in online groups because they dare not tell their families or friends what they’re going through for fear of not being believed or heard.
I recognize my supreme good fortune and privilege in having such attentive and collaborative providers, as well as excellent health insurance. Most patients do not have access to this level of care, and even I, as good as my care has been, often feel at sea.
A year is a long time to live in pain and uncertainty, but I survived ovarian cancer in my 20s and have lived with multiple sclerosis for the past decade, so prolonged illness is not new territory for me. What has been different is the persistent skepticism, even disbelief, about long COVID — skepticism so deep that it has limited inquiry into the devastating phenomenon.
Indeed, many patients have been dismissed by doctors who do not believe we are still sick. Many who fell ill in late winter and spring of 2020, when COVID tests were scarce or administered too late to register a positive viral load, fall outside the official case count and face health care providers who do not believe they were ever sick in the first place. Long haulers have been told their symptoms are caused by anxiety, and the most dismissive of doctors accuse them of seeking attention or of laziness.
But every health care provider who ignores our stories has missed an important opportunity to be part of the solution.
A year into the pandemic, long haulers often feel invisible and ignored. And we are not OK. Many patients share their symptoms and struggles with strangers in online groups because they dare not tell their families or friends what they’re going through for fear of not being believed or heard. Sometimes the information is personal or uncomfortable, but most often friends and even spouses simply no longer want to listen. In a profoundly isolating time, this added layer of rejection does psychic damage to the sick.
And yet, we are resilient and we are persistent.
That persistence is paying off. Sharing our knowledge and experiences online and with the media, we have conducted citizen research and told our stories. We have participated in studies and taken surveys. Facebook groups like Long Haul COVID Fighters and COVID-19 Longhauler Advocacy Project have been fighting for the resources we need, like the establishment of clinics across the nation to help patients in their recovery from long COVID. And we have found allies, including health care professionals who have taken the time to listen and have worked to unpack long COVID with us.
And now, finally, our illness has an official name, PASC, and those who suffer from it have the attention of the National Institutes for Health and the World Health Organization. As Dr. Fauci said on Feb. 24, “It’s very difficult to treat something when you don’t know what the target of the treatment is.” Using some of the $1.15 billion in funding approved by Congress in December, research initiatives to study the pathogenesis of PASC will begin, with the aim of finding therapeutics to treat the underlying causes.
It has been a long time coming. With potentially millions of people experiencing PASC, the valiant efforts of those exceptional providers already in the trenches with us are not enough.
The NIH initiatives promise the comprehensive attention and coordination of efforts that are so desperately needed. If we as a nation are to help those suffering from PASC — the majority of whom are women, previously healthy, active and in the prime of their careers — we must focus resources on the multifaceted impacts of long COVID. A year has already passed since the pandemic began, and many long haulers have lost their jobs and their health insurance, do not qualify for disability or unemployment benefits, are struggling to care for their families, and have no safety net. On top of that, they cannot find the medical care they need.
It is little wonder so many have given up hope. Amid the chaos and loss of the pandemic, we were all but abandoned.
At my first rehab appointment, as I was recovering from my short workout, Dr. Greenspan looked me in the eye and said to me, “I believe you will get better. Do you believe you will?” I did and I still do. And the government and the medical community are finally in our corner. I know it will require continued hard work and even more patience, but every long COVID patient deserves that level of commitment devoted to their recovery.
Ann E. Wallace, Ph.D., is a poet and essayist from Jersey City who has written and spoken about her experience with long COVID for HuffPost, USA Today, “Good Morning America” and elsewhere. She is an associate professor of English at New Jersey City University. Follow her online at https://AnnWallacePhD.com or on Twitter @annwlace409.