12/15/2023
Latest from Ed Yong: Reporting on Long Covid Taught Me to Be a Better Journalist
"In the early months of the Covid-19 pandemic, when many people who are now still sick were first infected, the common wisdom was that the coronavirus either sent you to an intensive care unit or, more commonly, caused mild symptoms that resolved after two weeks. But when my sister-in-law got infected in March 2020, she was still burning with fever after three weeks, then six, then more. In this newspaper and elsewhere, young and formerly healthy people shared stories about surviving but not recovering. When I interviewed scientists and clinicians about these lingering symptoms in May, most expressed surprise. “That’s unusual,” one said.
It wasn’t. By May 2020, affected patients had already formed support groups thousands strong, coined terms like long Covid and long-hauler and even conducted research on their own communities. Even that March, people with similar illnesses like myalgic encephalomyelitis (also known as chronic fatigue syndrome or M.E./C.F.S.) had warned that the new pathogen would trigger a wave of disability. They knew then what is clear now: People infected by Covid can be pummeled by months or years of debilitating symptoms, including extreme fatigue, cognitive impairment, chest pain, shortness of breath and postexertional malaise — a state in which existing symptoms worsen after even minor physical or mental exertion.
I wrote about long Covid in June 2020. In the following days, I got more than 100 emails from people who thought they were going mad — or had been told as much — and felt validated to see their reality reflected. That story was the first of an octet; those responses were the vanguards of thousands more.
Long-haulers have told me that through those pieces, they better understood what was happening to them, found community and medical care, and felt the relief of recognition at a time when friends, family members and health care professionals brushed off their ordeal as imaginary. As a science writer, I have written about many topics throughout my career. None have affected me more than long Covid. None have more profoundly changed my view about what journalism can achieve and how it can do so.
Covering long Covid solidified my view that science is not the objective, neutral force it is often misconstrued as. It is instead a human endeavor, relentlessly buffeted by our culture, values and politics. As energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity. Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism. I understood these dynamics only after interviewing social scientists, disability scholars and patients themselves, whose voices are often absent or minimized in the media. Like the pandemic writ large, long Covid is not just a health problem. It is a social one, and must also be understood as such.
Dismissal and gaslighting — you’re just depressed, it’s in your head — are among the worst aspects of long Covid, and can be as crushing as the physical suffering. They’re hard to fight because the symptoms can be so beyond the realm of everyday experience as to seem unbelievable, and because those same symptoms can sap energy and occlude mental acuity. Journalism, then, can be a conduit for empathy, putting words to the indescribable and clarifying the unfathomable for people too sick to do it themselves.
Many long-haulers have told me that they’ve used my work to finally get through to skeptical loved ones, employers and doctors — a use that, naïvely, I didn’t previously consider. I had always imagined that the testing ground for my writing was the minds of my readers, who would learn something new or perhaps even change what and how they think. But this one-step model is woefully incomplete because we are a social species. Journalism doesn’t stop with first-generation readers but cascades through their networks. Done well, it can make those networks stronger.
After my most recent piece, which explained how severe the fatigue of long Covid and M.E./C.F.S. can be, one long-hauler told me that her sister said, “I did not understand how sick you really felt.” Even healthy people started writing in: A 25-year-old reader who has spent her life watching her mother wrestling with M.E./C.F.S. said that until reading that piece, “I truly didn’t get it (or maybe didn’t believe her).” People who had been sick for years or even decades said it was the first time they had seen their lives accurately, fully and compassionately reflected in the press.
This is a damning indictment of my profession, my prepandemic self included. I am far from the only journalist covering this topic but clearly there aren’t enough of us. How could so many people feel so thoroughly unrepresented by an industry that purports to give voice to the voiceless?
In covering conditions like long Covid and M.E./C.F.S., many journalistic norms and biases work against us. Our love of iconoclasts privileges the voices of skeptics, who can profess to be canceled by patient groups, over the voices of patients who are actually suffering. Our fondness for novelty leaves us prone to ignoring chronic conditions that are, by definition, not new. Normalized aspects of our work like tight deadlines and phone interviews can be harmful to the people we most need to hear from.
We cannot afford those weaknesses. Around the world, tens of millions of people are suffering from long Covid. Some might recover but most long-haulers don’t fully return to their previous base line. At the same time, the pool of newly sick people will continue to grow since our leaders have rushed us back to an era of unrestrained airborne pathogens and lax public health policies — an era that had already cost millions of M.E./C.F.S. sufferers dearly long before Covid arrived.
In this status quo, people are expected to ignore the threat of infection, pay through the nose if they get sick and face stigma and ridicule if they become disabled. Journalism can and should repudiate that bargain. We are not neutral actors, reporting on the world at a remove; we also create that world through our choices, and we must do so with purpose, care and compassion.
Interviewing long-haulers isn’t benign. At minimum, I might be asking them to relive their worst experiences to a stranger. Worse, many, if not most, long-haulers experience postexertional malaise, in which minor physical or mental exertion can trigger a loss of energy so profound that I’ve described it as the annihilation of possibility. An hourlong call could wreck someone for days.
Knowing this, I started telling people upfront that they could end and reschedule the interview at the slightest inkling that their health might suffer — and some did pull that rip cord. I set long deadlines, knowing that I was working on what disability scholars have called crip time. While I usually insist that phone interviews yield better results, I happily sent written questions to long-haulers who struggled with real-time spoken conversations. Good journalists maintain a healthy distance from their sources, but this professional standard can morph into callousness: Staying independent can easily become, “I behave how I want and you deal with it.” With long Covid, I bend to accommodate my sources’ needs, not the other way around.
I bring as much curiosity and empathy as I can to interviews. I’m not fishing for quotes or dramatic details of horrible symptoms. I want to know how long-haulers feel, including the nuances and minutiae of their lives. I check my own thoughts on the fly, running my interpretations past my sources in real time to check if my understanding and assumptions are correct. I do this iteratively, asking them if they have had the same or similar experiences of the previous sources I’ve interviewed, to identify points of commonality or contention; everyone is wrong about something, and being empathetic doesn’t mean abandoning rigor.
This approach reveals sides to the illness that are easily missed. For many long-haulers, fatigue differs from everyday tiredness — more severe, multifaceted, harder to push through and not cured by sleep. Postexertional malaise is different again: Every symptom burns more fiercely; fatigue is accompanied by flulike, poisoned sensations; and one’s batteries aren’t just drained but missing entirely. These states are all too easily conflated, and their differences became clear to me only after many interviews and much careful listening.
I also center long-haulers in my reporting, treating them as active protagonists of their own stories instead of passive beneficiaries of medical aid. I want readers to empathize, not gawk. The patient-centric approach is sometimes dismissed as advocacy, which is positioned as antithetical to journalism. In fact, it’s simply good journalistic practice to give weight to the most knowledgeable sources.
Long-haulers saw and predicted the rise of long Covid before credentialed academics did. Many are patient experts who have read the scientific literature on long Covid and M.E./C.F.S. more deeply than many doctors because they are highly motivated to do so. Others are meta-experts who thoroughly understand the community’s desires, needs, history and rifts, and can distinguish reliable voices from grifters. They should be front and center of every story, not merely fodder for anecdotal ledes. Before the pandemic, I mostly interviewed academics with advanced degrees and institutional affiliations. Long Covid taught me to also seek expertise from actual experience, instead of mere credentials. (This is now especially easy to do because large databases of sources have been compiled.)
Those new attitudes and approaches also informed other articles that I wrote about immunocompromised people, burned-out health care and public health workers and people grieving loved ones who died of Covid. Those pieces, about people who had borne the brunt of the pandemic and were still suffering amid the rush to “normal,” gave me a sense of purpose amid deepening tragedy.
As the pandemic wore on, many grim outcomes I warned about came to pass, and most societal changes I hoped for did not. I watched two successive administrations make avoidable mistakes, and then make them anew with each successive surge or variant. I witnessed almost every publication that I once held in esteem become complicit in normalizing a level of death once billed as incalculable. It was galling, crushing work that wrecked my faith in journalism and its institutions. But the solace that many long-haulers drew from my pieces gave me solace in turn. It convinced me that there is still a point to this horrible work, a purpose in bearing witness to suffering and a reason to continue shouting into the abyss. Sometimes, even if just slightly, the abyss brightens.
I do not mean to be self-congratulatory. The long Covid crisis is far from resolved. Long-haulers need more than confirmation of their pain: They need well-funded and well-conducted research, social support, workplace accommodations and cures. But there is much we can do while waiting for and pushing toward those outcomes.
In his poem “Why Bother?” Sean Thomas Dougherty wrote, “Because right now, there is someone/out there with/a wound in the exact shape/of your words.” Those words are ours to provide, those wounds ours to plaster. Contrary to the widespread notion that speaking truth to power means being antagonistic and cold, journalists can, instead, act as a care-taking profession — one that soothes and nurtures. And we are among the only professions that can do so at a scale commensurate with the scope of the crises before us. We can make people who feel invisible feel seen. We can make everyone else look."
https://www.nytimes.com/2023/12/11/opinion/long-covid-reporting-lessons.html?unlocked_article_code=1.FU0.6fLv.mIncGMaCkIfb&smid=nytcore-ios-share&referringSource=articleShare&fbclid=IwAR1s80lkutJvS2MC_7y9hlLVKXKstALztIS256Na0gv1Oqht8dHKD2iAtFk
Covering long Covid solidified my view that science is not the objective, neutral force that it is often said to be.
