Lessons from a Semester of Community Engagement: Learning to Listen (Better)

A few short months ago, I packed my bags (and twelve houseplants) and moved to Queens, New York to join the ranks of students at CUNY’s Craig Newmark Graduate School of Journalism. I’m happy to report that all twelve houseplants have survived the journey.

If I’m being honest, I had a hard time deciding between graduate programs. I ultimately chose Newmark for a few reasons, not the least of which include culture, finances, and journalistic approach. When I say journalistic approach, I am referring to Newmark’s M.A. in Engagement Journalism program. It’s dedicated to reporting with and for — as opposed to on — communities.

One of the program’s first courses, quite accurately, is called Community Engagement. Under the direction of Dr. Carrie Brown and Jeff Jarvis, my classmates and I have spent the last four months questioning how to do journalism. What is journalism at its core? What is ethical? How can we do work that is less extractive and more collaborative?

As part of this course, each of my classmates and I have chosen a community to work with for the semester. This article breaks down my learnings after four months of listening to and engaging with people living with and affected by long COVID.

Who Makes Up This Community

Long COVID is the patient-created and commonly-used term to describe lingering symptoms of COVID-19. While researchers, doctors, and patients are working to further define and treat long COVID, it falls within the category of infectious-associated chronic conditions such as Lyme disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and post-Ebola syndrome.

Many of those living with long COVID self-identify as long-haulers. At present, experts estimate that roughly 3 to 10 million Americans are living with long COVID, and that between 10% to 50% of people infected by the coronavirus experience lingering symptoms for more than 6 months. More than 200 symptoms have been identified by those living with long COVID, and the range and severity of symptoms can vary widely. Think extreme fatigue, racing heart rate, difficulty breathing, brain fog, and muscle weakness, to name a few. Some long-haulers have been unable to go about their daily routines, return to work, or care for themselves amid degrading health. It’s clear that long COVID has major health, social, and economic implications for patients, researchers, policymakers, and healthcare providers around the world.

I set out to get to know this (very large) community, and those adjacent to it, asking questions like: What does it mean to live with long COVID? What does COVID-19 mean for long-term health? For public policy needs? What information and/or tools do you wish you had?

My goal is to collaborate with people living with and affected by long COVID — including long-haulers, people with related chronic conditions, medical providers, researchers, caregivers, public health professionals and disability advocates — to shine light on lived experiences, provide resources, and meet gaps in information needs. I examine cultural narratives and systemic forces that shape understandings of and access to health and wellbeing.

Information Needs, Gaps & Conflicts

I began engaging with people living with long COVID by listening. This involved spending time in online gathering spaces like Facebook groups and exploring Twitter hashtags like #LongCOVID. I learned that people living with long COVID are primarily gathering online. Given that many folks began experiencing long COVID amid early pandemic lockdown, this makes sense. Online gathering and dialogue provided refuge and connection amid a period of physical isolation. Online spaces are also more accessible for many people than in-person gatherings, given ongoing symptoms.

Listening also meant engaging in one-on-one conversations. I began mapping out information needs by reaching out and talking to more than twenty people — including those living with long COVID, medical providers, researchers, and caregivers. In these conversations, the primary goal was not to gather quotations for a story, but to learn. In addition to asking about people’s expertise and lived experiences, I discussed long COVID information needs with the people I spoke with.

The most common information needs that came up in these conversations included:

• Nonpartisan, reliable, and scientifically-sound health information
• Where and how to access long COVID care (e.g., dedicated clinics and COVID-friendly providers)
• General awareness and recognition of the existence of long COVID

Many information needs are being met by people living with long COVID. Online gatherings have inspired research teams, grassroots efforts, and local campaigns. For example, the Body Politic COVID-19 Support Group is now home to more than 20,000 members — all people living with long COVID. This digital gathering has inspired patient-led research efforts, such as the Patient-Led Research Collaborative (which led a groundbreaking study documenting more than 200 symptoms of COVID-19). Body Politic has also inspired national advocacy campaigns, such as Long COVID SOS. In Facebook groups, long-haulers share personal experiences, trade advice about navigating the medical system, and offer tips for recovery. One Facebook group is home to more than 60,000 people.

From this listening, I’ve also learned about several challenges affecting people living with long COVID, including:

• The repeated oversimplification and mischaracterization of long COVID
• The lack of access to supportive medical care and treatment
• The lack of a shared definition of long COVID and post-infectious syndromes (with input from patients, scientists, and healthcare professionals)
• The lack of policy, social, and economic supports for those experiencing long COVID

Some Key Lessons

As I reflect on my past four months, three core lessons stand out:

• Nuance and history is essential. In the early stages of community listening, it became clear to me that understanding the history of disability and chronic illness — for example, the way ME/CFS has been historically stigmatized and dismissed — would be critical to contextualizing any current events and minimizing harm. So, I have been reading, listening, and learning. The worst kinds of reporting cover current events without the nuance of real-world complexity or context. I strive to do the opposite in my work: to ground my journalistic efforts in historical context and, as the team at Solutions Journalism often says, to complicate the narrative.
• Listening takes time and practice. Listening is often not valued as the skill that it is. Techniques like conversational looping require practice. Despite the fact that listening should be at the heart of all journalism, most journalistic training does not include real-time feedback on interviewing practices. Traditional training takes a “learn by doing” approach (which, of course, has value). Yet it often sends people into the field with little practice, and has the potential to cause harm. I’m grateful that we spent several classes, and course assignments, practicing deep listening. It’s a skill I hope to continue to build.
• Follow-up is just as important. Listening is critical and active. But engagement journalism, by definition, requires a step further. It requires trust-building, collaboration, and power-sharing — all of which require engaging intentionally. In the coming months, I hope to build new relationships and deepen existing relationships through thoughtful feedback loops.

What’s Next

Going forward, I will continue to listen, learn, and engage. Most of my work these past four months has been digitally-focused. While I plan to continue to engage online — and this approach has allowed me to appreciate the sheer size and scope of the long COVID community — I would also like to engage more with folks who have limited online access to and/or knowledge about long COVID.

Reflecting on various information needs above, and my own skill sets, I am currently ideating around possible collaborations, including:

• Grassroots outreach — tabling and flyering — with Queens-based non-profit organizations supporting the local community’s recovery from COVID-19
• Collaboration on resource and/or data compilation with patients and fellow journalists

It’s important to note that these ideas are just that: ideas. Any project will need to be rooted in the information needs of those living with and affected by long COVID.

Doing this work is often difficult, heartbreaking, energizing, validating, and humbling all at once. As someone who struggled to navigate the U.S. healthcare system with a chronic condition in my early twenties, this work is professional and personal. I’m looking forward to continued listening and learning while addressing gaps in information needs in the coming months.