Opinion | Ed Yong: Reporting on Long Covid Taught Me to Be a Better Journalist

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 (P.E.M.), 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 each source 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.