Elena Kalodner-Martin’s research takes a turn when she leaves internet lurking behind.
Elena Kalodner-Martin an Assistant Professor in the Writing, Rhetoric, and Literacy Program at The Ohio State University. She is an award-winning technical and professional communication and medical rhetoric teacher and researcher, a social media scholar, and a patient advocate.
Story Transcript
It's February 2019. The snow piles outside my window are coated in dirt, my car is caked in road salt, and my cats are pawing at the front door, watching birds peck at the frozen ground. I give the document one more scroll, close my laptop, and just sit there for a second. I had just finished what felt like the first good draft of my dissertation prospectus. It's about women with chronic and contested illnesses like IBD, endometriosis, and Lyme's disease who use social media to talk about managing their health.
Back then, using your public social media account to talk about personal medical things was still pretty uncommon, and so a lot of people looked at it with skepticism. I wanted to understand how these women ended up in this niche space of the internet, what motivated them, and what they might be able to teach the skeptics or the people who thought that most of these creators were either just uninformed or, at worst, trying to manipulate their audience on purpose.
It's an academic project, but it's never just an academic project. I was diagnosed with Crohn's disease in 2011 and social media played a major role in how I survived those first few years. I learned how to adapt my diet from Twitter posts, I figured out how to manage my flare‑ups on Reddit threads, and I learned how to deal with immunosuppression from strangers who were generous enough to narrate their own experiences on Instagram.
In those early years, I was always a lurker. I never posted. I never identified myself as a patient. I was afraid to. I heard about how people talked about those people online. This dissertation was going to be the first time I openly said this mattered to me and it matters to others. I want to tell those women that what they're doing counts as knowledge, that it deserves attention, and that it deserves to be taken seriously. I have a well‑developed outline and a clear study design, and nothing can get in my way.
I sent it to my advisor feeling proud and shut the laptop.
A few weeks later, I gathered in a small room at the English department at the University of Massachusetts Amherst to watch a friend and colleague defend her dissertation. In true March Massachusetts fashion, it's freezing cold outside. We've all seen the news about the new virus by now, and so a few people crack the windows for airflow and stand by them, lightly shivering as the committee deliberates.
After the defense concludes, we stand around the tables clutching plastic cups of room‑temperature champagne, and an email from the university arrives. It says the campus will be closed for two weeks due to the novel coronavirus.
“This will be a strange but productive time,” I think, as I swing by my office to grab the books I'll need at home during the closure. “I'll get ahead on research. I'll read more. I'll get ahead on the dissertation.” I spent a few days re‑playing Legend of Zelda's Breath of the Wild and compulsively refreshing my phone.
Less than a full week later, UMass sends a second update. Campus will be closed for the rest of the semester. Campus might be closed next semester.
Thousands of other schools make the same call. “Wear a mask,” they say. “Practice social distancing. Wipe down your mail. Wear gloves if you go out.” And, interestingly, “Be careful where you're getting your information.”
Lying in bed comfortably bathed in the glow of my sleep disrupting blue light, I open TikTok for the first time in days. The dance videos of people doing The Renegade that were dominant on my For You page just a few days ago have totally vanished. Now everyone is online doing exactly what I came here to do too, interpret and discuss the new medical information we had all found ourselves in the middle of making sense of.
The first video I see is of an epidemiologist explaining the surge in COVID infections on the East Coast. He has four videos, the first of which was posted six days ago and he already has 2.4 million followers. The second is of a woman coughing. “I’ve never felt like this,” she swears. I like the video and return to it weeks later, and her daughter posted that she died.
The third video is a DIY sewing pattern for masks. The next is a DIY recipe for hand sanitizer, and then a recipe for homemade sourdough.
The last one I see is of a man pouring a beer and setting out a chaise lounger on his deck. “While you all are worrying about the Kung Flu,” the racist term that some use to describe COVID‑19 given its emergence in China, “I'll be out here. Come get me when you all wake up.”
The comments under this video are a war zone, with some agreeing that the virus is fake and the social distancing is unnecessary, and some arguing that this is a crisis scenario that necessitates every possible precaution. Others lean into the racist and xenophobic tropes in the original video. Some disagree. “It's made in the lab for population control.” “It's a rat and accidents happen.” “It's a government hoax.” Every comment is followed by further duets, stitches, fact checks, conspiracy threads, grief, rage, tutorials, data visualizations, prayer circles.
I'm angry, I'm scared, I'm tired, I'm confused, and underneath it all, I'm weirdly fascinated. I can't tell if I'm doomscrolling or doing fieldwork, but underneath it all, I have this deep and uncomfortable sense of recognition. What's unfolding here on TikTok, people using social media to make sense of health and medicine, is my field. It's what I study, but is it still? Is it ever possible to become an expert on something online and something medical when medicine and digital spaces are constantly changing? Could I even do a project on this anymore when everything is so uncertain?
After weeks of scrolling, of drafting half paragraphs and deleting them and crossing out almost every single note I write to myself, I realize that what I have seen online isn't so different than what we're actually seeing unfold on TikTok now. People are comparing the onset of their symptoms, sharing recipes for burning oranges and eating the skin to relieve the loss of taste that accompanies many early infections, and sharing timely information about when and where to access life‑saving resources like masks, disinfectants, and later, vaccines.
It becomes clear as I scroll through video after video that the central thing I've set out to do in my original study is still here. Patients are making sense of their symptoms together. They're building networks of support and information outside of the doctor's office. But now, it's not an uncommon practice. And to use the phrase we've heard repeated all too many times by now, our unprecedented times are warranting an unprecedented shift in my research. A study about patients' health communication practices on social media that doesn't address COVID, the elephant in basically every room across the globe, would already be outdated by the time I start drafting chapter one.
Part of the fear I have about changing this project came from the very practical realities of being a PhD student. There's always a clock running in the background. Funding timelines, fellowship limits, expectations about when you should file your prospectus and defend your dissertation. But my original project, the one I'd already proposed, was clear and manageable. I believed in it and, more importantly, it had a clear path to completion. But believing in it didn't stop the clock and it didn't resolve the growing sense that the project that I had designed had suddenly shifted.
The rest of the fear came from the opposite possibility. If I tried to redesign my old project around COVID, the ground might shift again before I finish. It might be in a week or it might be in a year, but at some point it would be too late to change direction again.
I told my advisor, sitting in a Zoom happy hour in our own separate homes, my new plan. I told her what no advisor wants to hear, that I wasn't scrapping my project necessarily, but I was changing it. I would delay collecting research and more time gathering background information, spend more time doomscrolling. It was great for the research and terrible for my mental health.
This summer is chaotic in all the ways that probably sound familiar to you. Every time I tried to write about health communication online, something shifted. New CDC guidance would come out. A new piece of misinformation would go viral. Another wave of grief would move through the news cycle. The object of study was refusing to stay still, and it felt impossible to keep up.
Then I began to wonder, “What if I don't have to?” Before I can scare myself out of it, I open the app and tap the little plus sign at the bottom of the black screen. I'm sitting on the floor, leaning back against my couch. Next to me is a stack of printed journal articles, pages bent up and marked, half of them flooded with neon yellow highlighting.
I pick one up, hold it towards the camera, and start talking. “Okay, so I'm a researcher who studies how people talk about health online and a lot of what we're seeing about COVID, arguments about who knows what, confusion about evidence, people trying to figure out who to trust, these are actually things that patient communities have been dealing with for years.”
I keep going, trying to explain a credibility gap in about 60 seconds, translating as I go, adjusting mid‑sentence, watching myself think through it out loud.
Halfway through, my cat walks into the frame and settles directly in front of the camera. I pause for a second, look at him, and keep talking. When I finish, I add a few hashtags: “Science communication”, “Health communication”, “Grad school”, and, of course, “COVID‑19”, hover over the button for a moment and press “Post”. And I toss my phone onto the couch before I can watch it back.
For about an hour, nothing happens. Then a few people start commenting. At first, it was mostly other grad students or people saying things like, “Wait, this is actually really interesting, we felt both encouraging and slightly alarming.” Then someone asks what one of the studies I cited was because they wanted to read it. Another person says they've been following chronic illness creators who've been warning about credibility issues long before the pandemic.
Someone else asks if I could explain why misinformation spread so quickly, even when experts correct it. Someone stitches it and said we need this work now more than ever. We need people to stop ignoring medical communication on TikTok.
Within a day or two, my video has a few thousand views. I stare at the numbers on my phone, blinking and thinking, “Okay, that's officially more people than I know in real life.” A few days later, it has hundreds of thousands of views. On TikTok, that's not exactly headline news, but for someone whose usual audience is a dissertation committee and maybe six people at a conference panel, it felt like stepping into a stadium.
The comments keep rolling in. Questions, jokes, thanks, challenges. I start typing responses and then deleting them, then trying again, shorter this time, clearer, something that can hold up under the weight of being screenshot and shared.
Then, of course, there are the established science communication creators. I recognize a few names from papers and conferences, but here they are in my comments, stitching my video, adding context, disagreeing, extending the conversation in directions I had never anticipated.
I followed them, watched their feeds, saw how long that they had been doing this, how they practiced, how they were holding attention and absorbing pushback, and returning the next day to do it all over again.
Somewhere in the middle of this, I realized I wasn't really watching anymore. I was inside it, refreshing, responding, revising, trying to keep my footing as the conversation shifted and the world adapted. It was like accidentally on purpose leaving the ivory tower and leaving the door open behind me so that I could get back in, so that other academics might join us here, and so that all the people online with their expertise, insights, lived experience, and everything they could teach us could come inside.