Thread by @edyong209

🧵I want to share some thoughts about reporting on long COVID and other complex chronic illnesses. (e.g. below)
This is a thread about the ethos behind these pieces, and how I’ve approached interviewing, writing, and the rest of it. 1/

https://twitter.com/edyong209/status/1569302974811308032

I still consider myself new to this kind of reporting & am learning as I go. This isn’t a finger-wagging lecture. I'm just sharing some stuff I've thought about a lot. I hope it will be helpful to other journalists who want to do this kind of work & inspire more to do so. 2/

And many (most?) of these ideas and principles also apply to other pieces I’ve written about people who’ve taken the brunt of the pandemic, including those grieving loved ones lost to COVID, immunocompromised folks, and burned-out healthcare workers. 3/

Okay, first and foremost, I recognize that interviews have costs. Obviously, you’re asking people to relive some of their worst experiences and to be incredibly vulnerable, which isn’t something to do lightly. But less obviously… 4/

If someone has post-exertional malaise—a common long-COVID symptom & a hallmark of ME/CFS—minor physical *or mental* exertion can lead to major crashes. An hour-long call could wreck someone for days. That imbues a heavy responsibility on the interviewer... 5/

So, e.g., while I often overreport, calling more sources than is necessary, I don’t for long-hauler pieces. I do as many interviews as I need and no more. And if I ask people for help in finding sources, I specify exactly how many I’m looking to talk to. 6/

This is crucial: I make sure that people know upfront that they can pull out of a scheduled interview at any time—including mid-call—if they feel that they don’t have the spoons. I say this at the start of every call. And people *have* pulled out. 7/

Normal deadlines go out the window. I make my schedule work around my interviewees’ energy levels, not the other way around. People will absolutely push themselves to make their voices heard, but they shouldn't have to pay that cost if I can be flexible instead. 8/

I bring as much curiosity and empathy as I can to interviews. I don’t just want basic biographical or episodic details; I want to know how people feel, how they think about their problems, what it truly means to walk in their shoes. I’m not just fishing for good quotes. 9/

I treat people’s stories as if they were my own. I try very hard to make sure that all the details and nuances are correct and representative. No one owes you their story; sharing one is an incredibly vulnerable thing to do, and must be honored. 10/

So, I check my own thoughts on the fly. “When you say X, it makes me think Y. Have I got that right?” This invites people to expand on what they’ve said, while also checking my own assumptions, interpretations, and frames as we go. 11/

I try to be aware of frames I might have internalized going into a story. E.g. the idea of long COVID or ME/CFS as mystery illnesses is very common. But… are they? Why does that framing exist? Who does it serve? Maybe that’s something to ask people about! 12/

I write these pieces in part to make people who feel invisible feel seen instead—to create a gestalt mirror that reflects countless individual experiences. These illnesses are usually extremely varied, but if I do my job right, I can make everyone feel reflected. 13/

To do that, I interview iteratively. “The last person I talked to said X, does that ring true for you?” This helps to clarify what parts of people’s experiences are constant or variable. It identifies points of contention or commonality. 14/

I also try to call folks who have a bigger view and can convey a multitude of experiences—support-group leaders, long-time activists & advocates, clinicians, anthropologists, historians. The disability community is *priceless*. 15/

Also, a lot of chronically ill folks are healthcare workers. Their perspectives are *invaluable* and help to push against simplistic patient vs. doctor narratives. E.g. theatlantic.com/health/archive… 16/

I don’t shy away from harder questions but you can hardball without being an ass about it! Almost every long-hauler has experienced disbelief & gaslighting. You can ask how they respond to it without making them respond to *you doing it*. 17/

To be clear, I'm not saying we should be credulous. I don’t believe everything patients tell me & everyone is wrong about *something*. But this is about approaching interviews from a baseline of respect and compassion. 18/

I’ve tried to center patients. I don’t use them in anecdotal ledes only to quote academics thereafter. They may be suffering but they’re still protagonists of their own story, with power & agency, not passive beneficiaries of medical aid. I want people to empathize, not gawk. 19/

I prefer to use the terms that patient communities developed and use—e.g. long COVID instead of PASC. There are good reasons why these terms were created, and why they should still be used.
ncbi.nlm.nih.gov/pmc/articles/P…
blogs.bmj.com/bmj/2020/10/01… 20/

A patient-centered approach extends to framing. Often, the questions that academics are focused on are completely different to the issues that patients care about. You don’t get the latter if you only talk to the former (or if you're using the former as anecdote fodder). 21/

Context is crucial, and I’ve tried to provide it. COVID is new; much about it isn’t. Brain fog is common to many conditions. Post-viral illnesses have been around for a long time. Drawing connections is more useful than creating silos. 22/

I’ve treated long-haulers as the experts on their own condition—because they are. And I don’t just mean experts in their symptoms or experiences. I mean experts in the scientific literature surrounding their illness. Patients use Pubmed too, y’all. 23/

Fwiw, I’m not part of any patient forums or support groups. I feel that those are their spaces, and it’s important for them to be private and safe. I have no business lurking there, and don’t need to do so when public forums like this one exist. 24/

In recent pieces on brain fog and ME/CFS, I’ve recorded audio versions because people commonly tell me that their brain fog makes it hard to read long pieces. I should have done that for past long-COVID pieces and regret not doing so. 25/

After these pieces are published, I get a lot of emails—approx. 200-300 in the last month alone. I try to read them all and respond to as many as I can. Again, I know that writing these exerts a cost, and I try to honor that by at least reading. 26/

When I can’t respond, people at least get my now-permanent auto-reply which includes “If u're a long-hauler, someone w/ similar chronic illness, or someone immunocomp'd, I hear you. I can't reply to everyone but I'm listening. I hope each day is a little easier than the last” 27/

A lot of the messages I get say: This is the first time I’ve seen my experience fully and accurately reflected. That's gratifying but tragic. It doesn’t mean others aren’t doing this work; it does suggest there aren’t enough who are doing so. Feeling seen shouldn’t feel rare. 28/

At the start of this, I said I hope more of my peers tackle these kinds of stories. They've been more meaningful to me than anything else I've done professionally. I know they’ve had an impact. They’ve helped people. What more can we ask for from our work? 29/

Here are links to other pieces and resources that you may find helpful: 30/

On trauma-informed reporting: niemanreports.org/articles/menta…
dartcenter.org/resources/dart…

On covering long COVID
centerforhealthjournalism.org/resources/less…
drive.google.com/file/d/1_H4Yd-…

I don't think any of what's in this thread is hugely profound or complicated. I haven’t been trained in any of it, I still make mistakes, and I’m still learning how to do it. But curiosity, kindness, and empathy are the tentpoles. Everything else unfolds from that. End/

Wait, one more thing: The responses to these pieces have been overwhelming but I try to focus on the work. What people need is clear, compassionate reporting. What they don't need is a self-described ally with a savior mentality; lord knows there are *plenty* of those around.