"I think about each and every word I say very carefully. Words cost me more now." Credit: Griffin Wooldridge / Unsplash

In early January, I contracted COVID-19 on an international flight home to the United States. It started with the symptoms of a simple cold, then within a couple of weeks, chest pain, abdominal pain, and shortness of breath. That was followed by unrelenting fevers starting in early March and exhaustion even with the most basic tasks like talking or taking a shower, as I moved into the basement to isolate myself from my wife and nine-year-old child. Later, I developed vein inflammation and a voice-box ulcer. Most recently, at nearly nine months since onset, I was diagnosed with post-viral syndrome, otherwise known as myalgic encephalomyelitis.

Now, speaking even briefly leads to intense throat pain, cracks in my voice, and unrelenting throbbing in my throat; I cannot raise my voice in the slightest without instant agony. That fact is particularly challenging for me as a parent, in these days of remote learning and nonstop togetherness. I can’t prove what I had was COVID-19. There was no testing back then, and since then antibody tests have come up negative. But despite living in this purgatory, I know this was unlike any sickness I’ve ever felt before, with over eight months of cycling symptoms such as malaise, systemic pain, severe exhaustion, heart rate extremes, and neurological symptoms like brain fog, headaches, and extreme dizziness.

On August 19, journalist Ed Yong published an article in The Atlantic titled: “Long-Haulers Are Redefining COVID-19.” It detailed how many individuals considered mildly infected have “unrelenting and unpredictable symptoms.” In that article, Hannah Davis, one of the administrators of the COVID support group I belong to that has more than 8,000 participants, says that someone in the group got sick in January and “posts from the future.” I am that voice from the future. And I think about each and every word I say very carefully. Words cost me more now. For the past few months, it hasn’t only been the ulcer that has prevented me from speaking out—I have been silent out of fear of being trolled or stigmatized for being among the first in our country to have had the disease. Most of my extended family, colleagues, and friends have no idea what our family has suffered.

In the support group, I have been transparent about testing negative, both for active COVID and antibodies. Yet, thousands of other participants have connected with my story. They too relate to the odd experiences of “hot face,” “cold flashes,” ear pain, and bruises that randomly appear on limbs. Their relief is palpable when I reply from the future that yes, I had that symptom and it did ultimately resolve. Like me, many long-haulers could not access testing in time or at all, compounding a denial of access to medical and emotional support. This denial of access to appropriate care continues and is an unrelenting systemic failure which— as a white woman—I am acutely aware disproportionately impacts people of color. I try to offer my fellow long-haulers hope, because most of my estimated 90 distinct symptoms resolved over time. Privately those suffering reach out to me because their doctors or loved ones don’t believe them, and this doubt causes further despair that they will never recover. No one wants this and certainly no one wants it to linger for most of a year; everyone with whom I have connected wishes only to be fully restored to their pre-COVID health. They want to forget it entirely, in fact, yet the virus’s grasp on some of us at the cellular level cannot be easily broken. 

My voice has been publicly absent until now. As the number of COVID cases rises, however, those with long COVID are statistically also increasing. The higher those numbers, the more of us in this nation there will be who suffer for months on end, not the two weeks generally assumed to be the case for those who are not hospitalized.

Collective trauma, which is really what the world is currently experiencing, requires a shift in reality from that safe place of denial, to the acknowledgment that life has permanently changed. The loved ones of the over 200,000 people who abruptly died in the United States have suffered incomprehensible loss. Numbers of infected children, teens, and young adults continue to rise: do we really want to further risk our country’s future? As I know from my support group, there are also children with months of similarly cycling symptoms, much ignored like long-hauler adults. Finally, stories are starting to emerge about long COVID in kids, yet no one in the medical field has truly taken the time to study long COVID in children, because the recurring message from the start has been that kids are not impacted. 

I frequently offer encouragement to those in the worst throes of the illness, that it is not forever, that they will heal over time. I believe they will have better seconds and minutes and hours and days that will stack on top of one another. I believe that full recovery is possible, not just for us individuals, but for our nation and the world, as well.

Yet, the first step is to admit we are a world in pain; this has changed us. We need to stop pretending the physical and emotional impact of this disease is “mild” or “tolerable,” or that it is worth sacrificing the few for the many. We need to stop minimizing COVID-19 and what it has the potential to do, and we need to stop acting like we know what it looks like over the long-term. We must start by listening to long-haulers and creating longitudinal studies with them at the center. More post-COVID care centers need to open with financial support to allow accessibility for anyone symptomatic for long COVID, whether patients prove it with positive test results or not. We need to stop assuming that someone asymptomatic or mildly impacted with a “cold” will therefore never experience emerging symptoms, as we now know that even young athletes can suffer serious complications weeks or even months later. We must stop saying that an individual who died of COVID had underlying conditions—or was in “perfect” health as if that person is an exception—because that centers the concept of agency (and often blame) with the individual, when in fact our leaders have failed us. We must provide financial, medical, and employment protections to anyone presumed positive based on symptoms, and not make this dependent on unreliable testing rooted in timing and privilege.

Medical hope arises for individuals, and for the collective, when a problem is acknowledged with grace and honesty and when considerations for individual differences are provided, even when all the pieces are unknown. We must be confident that when we speak, someone will hear. We must raise our voices toward positive change, no matter how much it might hurt.  v