Digital Illness Narratives of Chinese Adults With Coronary Heart Disease on Douyin: A Qualitative Narrative Analysis

Heart disease is often thought of as a sudden event, a moment when the body fails and a hospital takes over. But for the millions of people living with coronary heart disease, the condition is less like a single explosion and more like a long, complicated conversation with one's own body and the world around it. This conversation involves learning to read confusing signals, making sense of complex medical choices, and figuring out how to keep working and caring for a family when the body no longer feels entirely reliable. In recent years, a new space has emerged where people are having this conversation: short-video apps. In China, the platform Douyin has become a place where patients record their daily lives, not just to show off, but to document the messy, non-linear reality of living with a chronic illness. Researchers have begun to look at these videos to understand how people make sense of their health when the traditional medical narrative ends and the daily struggle begins.

A team of researchers from several Chinese universities set out to understand exactly how patients with coronary heart disease tell their stories on Douyin. They did not conduct interviews or surveys. Instead, they watched and analyzed the public posts of fourteen people who had chosen to share their journeys online. These individuals, ranging in age from thirty-five to sixty-eight, had all experienced heart attacks, stent procedures, or bypass surgeries. The researchers followed their accounts over a period of time, collecting hundreds of video and text posts that covered everything from the first moment of feeling unwell to the long months of recovery and daily management. By reading these stories closely, the team identified four main ways these patients constructed their narratives, revealing that the experience of heart disease is not a straight line from sickness to health, but a series of overlapping struggles and adjustments.

The first pattern the researchers found was what they called the "alarm and misrecognition" story. Before a diagnosis, the body often sends warning signs that are easy to ignore. Patients described feeling chest tightness, unusual fatigue, or nausea, but they did not immediately think, "My heart is failing." Instead, they told themselves they were just tired from work, that they had eaten something bad, or that they needed more rest. This was not because they were ignorant of medicine, but because their bodies were trying to fit these strange sensations into the familiar rhythm of their daily lives. They wanted to keep working and caring for their families, so they interpreted the pain as something temporary. It was only when the symptoms became severe and they were rushed to the emergency room that the reality set in. The moment of diagnosis was a shock, not just because of the medical label, but because it forced them to stop being the person who could do everything and start being a patient who had to pay attention to every heartbeat.

Once the diagnosis was made, a second narrative took over: the story of therapeutic uncertainty. The researchers found that patients did not simply accept what doctors told them; they actively tried to understand the complex choices ahead. Terms like "stent," "bypass," or "restenosis" (when a blood vessel narrows again) were frightening and confusing. Patients described writing down words they did not understand, asking doctors to explain the risks in plain language, and worrying about whether a treatment would truly fix the problem or just delay the next crisis. The fear was not just about the surgery itself, but about the future. They worried that the treatment might fail, that the medication might have side effects, or that the pain would return. This uncertainty did not end when they left the hospital. Instead, it became a constant background noise, a question of whether the body could be trusted again.

The third narrative was about rebuilding trust in the body, a process the researchers called "embodied reconstruction." After leaving the hospital, patients faced a difficult paradox: they needed to move to get better, but moving felt dangerous. A walk that used to be easy now felt like a test. Patients described checking their heart rates after every few hundred steps, worrying that a slight discomfort meant their stent was failing. Recovery was not a straight line back to how they were before. It was a slow, cautious negotiation. They learned to break down their day into small, manageable actions: a short walk, a rest, a check of their blood pressure. They had to accept that some days would feel good and others would feel tired, and that this fluctuation did not mean they were failing. This was a new way of living, where the body was no longer a silent machine but a partner that required constant, gentle attention.

Finally, the researchers identified a story of "negotiated responsibility and digital solidarity." Heart disease does not just affect the individual; it reshapes the entire family. Patients had to figure out who would do the housework, who would care for the children or elderly parents, and how to pay for medical bills while potentially earning less money. They could not simply go back to their old roles. At the same time, the Douyin platform became a crucial space for support. Patients shared their stories to find others who understood the specific fear of chest pain or the confusion of medication schedules. They exchanged practical tips, like how to pack a bag for a hospital visit or how to explain their condition to a boss. However, they were also careful. They knew that advice from a stranger online could not replace a doctor's orders. They used these digital spaces to feel less alone, to share the burden of their illness, and to remind each other that while the disease changed the pace of life, it did not have to take away life itself.

The study suggests that for these patients, recovery is not about defeating the disease once and for all. It is about learning to live with it, to manage the uncertainty, and to find a new balance between their own needs and the needs of their families. The researchers found that the digital platform did more than just record these stories; it helped shape them. By sharing their experiences, patients turned their private fears into a collective understanding. They showed that living with heart disease is a continuous process of adjustment, where the body, the family, and the community are all constantly renegotiating what it means to be healthy. This research highlights that medical care cannot stop at the hospital door. To truly support patients, doctors and families must understand that the journey involves navigating fear, rebuilding trust in one's own body, and finding a way to keep moving forward even when the path is not clear.