When working on a therapy, it is easy to become absorbed in the science — the molecular pathways, the design of guide RNAs, the parameters of an experiment. Yet hepatitis B is not only a biomedical problem. It is also a lived experience that shapes people’s lives, relationships, and opportunities. We realized that if our project is to be meaningful, we must understand not only the virus, but also the stigma and silence surrounding it.
That is why we began speaking directly with people living with HBV. By listening to their voices, we sought to bridge the gap between laboratory work and patient reality. These conversations reminded us that behind every statistic are individuals who carry the weight of misunderstanding, discrimination, and resilience.
For us, collecting patient stories was not about case studies or clinical data. It was about humanizing hepatitis B — showing that most people affected are ordinary individuals, often infected early in life, and that their diagnosis does not define who they are. Through openness and testimony, they challenge stereotypes, encourage others to seek care, and demonstrate the power of community.
We are deeply grateful to those who shared their experiences with us. Their stories guided our thinking and strengthened our conviction that solutions to hepatitis B must be developed with patients’ perspectives at the center.
Age: 37
Occupation: Independent media creator (former fitness coach)
Living with hepatitis B: since 2007 (18 years)
How he found out: routine university entrance health check (abnormal liver enzymes)
“I first learned 18 years ago, during the medical check before university. My liver enzymes were high, and further testing confirmed HBV. Back then, I had almost no awareness of what hepatitis B was. My first reaction wasn’t even fear—it was blankness, and then a practical worry: would I still be allowed to enroll?” recalls Yicun.
Treatment began with an imported antiviral drug, plus six months of traditional Chinese medicine. “I carried the pills in a small case and hid to take them after meals—I was afraid classmates would see. When you hear the word ‘infectious’ and you don’t have real knowledge, you worry about others.” In his third year, he stopped treatment on his own. “The liver doesn’t hurt—so I convinced myself I was fine.” His viral load later rose to billions of copies.
After graduation, he became a fitness coach. For nearly five years, he neither treated nor followed up. In 2022, a friend noticed the yellow in his eyes. “That night I started vomiting. Only in the hospital did I learn it was acute liver failure.” He spent 23 days inpatient and survived. Since then, he has been on modern antiviral therapy (now a tenofovir-based regimen). His liver function and imaging are normal; HBsAg is in the low hundreds.
He has faced stigma in everyday life. “Some clients complained and canceled when they found out; one relationship ended immediately.” But many peers reacted calmly. “In our generation, a lot of people know someone with HBV. Fear often comes from misunderstanding, not malice.”
In late 2023, Yicun began posting videos; since April 15, 2024, he has also live-streamed regularly. His initial aim was practical—safe training and nutrition for people with HBV. Over time, his mission grew: encouraging early, guideline-based treatment, supporting adherence, and showing that life continues. Messages from his audience reshaped that mission. He recalls three cases: a man from Jiangxi whose seven-year engagement collapsed when the bride’s family refused to accept HBV; a woman in Xinjiang struggling with her husband’s heavy drinking while being advised to buy unaffordable herbal remedies; and a father in Shaanxi paralyzed by the phrase “lifelong medication,” keeping his prescribed antivirals unopened for half a year. “On the outside many look strong, but inside they are fragile. They need facts, community, and a way forward.”
His message is sharply balanced: “HBV is more dangerous than you think if you ignore it—but far less frightening if you face it early, treat it properly, and live well. Those two halves need to be said together.” He intends to continue publishing and sharing his check-up results—not for sensation, but to provide a living demonstration of informed choices. “If my numbers and experience push even a few people to start treatment on time, it’s worth it.”
Q: Your age and occupation.
A: Born in 1985; 37 at the time of interview. Full-time independent media
creator.
Q: When and how did you discover your HBV status? What did you feel?
A: During the university entrance exam, 18 years ago. At first I felt
nothing, then only concern: could I still enroll? I had almost no knowledge of HBV then.
Q: Key stages from diagnosis to your current stable condition.
A: Initially imported antiviral plus six months of TCM; later stopped on my
own in the third year—since the liver has no nerves, I felt nothing. My viral load soared.
From 2011 I worked as a fitness coach; for ~5 years I had no treatment or check-ups. In
2022, I developed acute liver failure, hospitalized 23 days. Since then I’ve been on modern
antivirals (tenofovir-based), with good labs and imaging, HBsAg now low.
Q: Reactions from those around you; did you face discrimination?
A: Some
Q: What are the biggest misconceptions about HBV?
A: Among patients: “It’s hopeless, treatment won’t help.” Among
non-patients: “It spreads easily through casual contact, shared meals, or talking.” Both are
wrong—transmission is specific, and treatment can control HBV and even achieve functional
cure in some.
Q: Why did you decide to go public and document your life with HBV?
A: I wanted to do something meaningful. I saw fear, misinformation, and
people delaying care. I began posting in November 2023, live-streaming from April 2024. At
first I shared fitness/nutrition; now my mission is broader—promote early treatment,
adherence, and a healthier lifestyle.
Q: Something unexpected you discovered while creating content.
A: That I’m actually suited to this role—and that many patients, though
they look strong, are psychologically fragile. Messaging needs facts and empathy.
Q: Memorable messages from followers. A: (1) A man’s seven-year relationship collapsed due to stigma. (2) A woman in Xinjiang desperate about her husband’s drinking and unaffordable remedies. (3) A father in Shaanxi too afraid to start “lifelong treatment,” leaving the pills unopened. These taught me to focus more on early, evidence-based care and real encouragement.
Q: One message to people living with HBV. A: Don’t delay. If treatment is indicated, start and stick with it. Pair it with healthy sleep, diet, and exercise. Ignoring HBV is risky; treating it early makes it manageable.
Q: One message to those without HBV. A: Learn the real transmission routes and give basic respect. HBV is an illness, not a moral fault.
Q: What social changes would help? A: Normalize HBV as “just another disease.” More education on transmission, supportive workplaces, affordable care. Things are improving, but we need to reach the point where saying “I have HBV” is as simple as saying “I have the flu.”
Q: Do you plan to continue sharing? A: Yes. I’ll keep posting my follow-up results and practical content. With a growing audience comes responsibility—if transparency helps others make informed choices, it matters.
Age: 33
Occupation: Freelance (former employee in internet- and media- companies)
Living with hepatitis B: since 2015 (10 years)
Living with hepatitis B: How she found out: routine health check before graduating from university
Wendy first learned about her hepatitis B diagnosis in 2015, during her final year of undergraduate studies. “It was a very accidental discovery during a routine check,” she recalls. “At that time, my knowledge of hepatitis B was very limited. I was frightened. I thought this was a disease that was hard to treat, highly contagious, and I carried a strong sense of stigma because I was so young.”
A pivotal moment in her journey came last year, when Wendy decided to speak publicly about her status. “I started a social media account and shared my story. That was a turning point. Once you go public, you cut ties with certain fears and secrets. It changed my life in many ways.”
When asked about the reactions of those around her, Wendy considers herself fortunate. “My closest family and friends gave me support. Of course, misunderstandings exist—people in China still lack knowledge about hepatitis B. Sometimes I face the burden of explaining again and again. But compared to many other patients, I’ve been lucky to receive mostly positive responses.”
She points out that the biggest misconception remains basic transmission. “Many still think you can get it from eating together, or even that it’s hereditary. These are ideas from decades ago, but they persist because people simply don’t have access to correct information.”
Her decision to share publicly was not planned. “It was spontaneous, not something I agonized over. But the response surprised me. I received thousands of comments and private messages. People shared their own life stories, their struggles, their turning points. Some messages were heartbreaking. I remember one from a woman whose brother was the first in their village to attend university. After he was diagnosed with hepatitis B, he gave up. He never even collected his diploma, and for more than twenty years he didn’t return home. That story really stayed with me. It showed me how devastating misunderstanding and stigma can be.”
For Wendy, this is why continuing her advocacy work feels meaningful. “I want to provide a reference point—for patients, to show that you can live a stable and normal life; and for those without hepatitis B, to understand what their friends or family might go through, and how they can support them better.”
Asked what message she would give to others, Wendy is clear: “For people living with hepatitis B, don’t frame your life as ‘carrying this disease.’ It’s like diabetes—it’s a chronic condition, manageable with proper care. With today’s treatment and prevention, transmission risks are minimal, and the stigma is unnecessary. Don’t let this label control your life. Focus on living fully. For those without hepatitis B, the best thing you can do is to replace fear with understanding.”
Looking forward, she hopes for a society where hepatitis B is no longer a taboo. “I imagine a future where talking about it is as casual as any other health issue, without whispers or shame. That would be an ideal state.”
Wendy continues to run her account and plans to keep sharing. “Every story I tell, every video I post, might reach someone who needs it. If my experiences can help even a little, then it’s worth it.”
Q: Could you briefly introduce yourself — your background, age, and
occupation?
A:My name online is 盛楠, or Wendy. I’m 33 years old. I used to work in
large internet companies and media companies.
Q: When did you first find out you had hepatitis B, and how did you feel at that
moment?
A:It was in 2015, just before graduating from university. I discovered it
by accident during a routine test. At first, I was very scared, because my understanding was
that it was hard to treat and highly contagious. As a young person, I felt a strong sense of
stigma.
Q: From diagnosis until now, what have been the key moments in your
journey?
A:I’ve never started antiviral treatment, because my indicators have always
been stable. For almost 10 years I’ve had regular check-ups every six months in Shanghai. My
viral load dropped from 10⁸ to 10², and I even seroconverted on HBeAg. The biggest turning
point was last year when I decided to make my condition public on social media.
Q: How did your family and friends react after learning about your
diagnosis?
A:I’ve been lucky — my closest family and friends gave me positive support.
Of course, sometimes there’s misunderstanding, but overall I haven’t experienced much
discrimination personally.
Q: What do you think is the biggest misconception about hepatitis B
today?
A:Many people still believe you can get infected by eating together, or
that it’s hereditary. These outdated ideas persist because people don’t have access to the
right information.
Q: Why did you decide to share your story publicly online?
A:It was a spontaneous decision, not something I planned. But after I
posted, I received thousands of comments and private messages. Many people shared their own
life stories. One that touched me deeply was about a man who was the first in his village to
go to university, but after his hepatitis B diagnosis he gave up everything. Stories like
that showed me how damaging stigma can be.
Q: What kind of feedback from followers has impressed you the most?
A:The sheer number of personal stories. Some are very painful, like people
who hid their condition for decades and suffered in silence. It made me realize that sharing
my own experience could give others courage and a sense of connection.
Q: What message would you like to give to people living with hepatitis
B?
A:Don’t let it define you. Hepatitis B today is a manageable chronic
disease, like diabetes. With treatment and prevention, there’s little risk of transmission.
Don’t label yourself as a victim. Live your life fully.
Q: And what would you like to say to people without hepatitis B?
A:Replace fear with understanding. Learn the facts, so you can better
support friends or family who have hepatitis B.
Q: Looking to the future, what changes do you hope to see in society’s
attitude?
A:I hope one day hepatitis B can be spoken about casually, like any other
health condition, without stigma or secrecy. That would be ideal.
Q: Do you plan to continue sharing on your social media account?
A:Yes. I will keep posting, because my experience can provide reference for
patients and raise awareness among the wider public. Even if it helps just a few people,
it’s worth it.
Age: 36
Occupation: Freelance
Living with hepatitis B: since 2007 (18 years)
How he found out: medical examination for a health certificate when applying for a job
“When I first saw the result, my mind went blank,” Li Kuan recalls. He was a teenager in 2007, fresh out of middle school and applying for work. During the health check for a sanitation card, he learned he had hepatitis B. “I didn’t even know what it was. Back then the internet wasn’t what it is today, no one around me really understood it. After a few minutes, fear set in — I was young and thought: am I going to die?”
The diagnosis threatened his first job prospects. “In 2007 the health card was everything for certain jobs. If you couldn’t get it, the doors closed.” Searching online, he landed in a private clinic. “They promised a cure,” he says. “I spent over 20,000 RMB in about a year. Nothing worked. That’s when I realized I’d been scammed.”
Switching to a public hospital changed the course. “Doctors there told me it wasn’t as scary as I thought. At that time, based on guidelines, my liver function was normal, so I didn’t need treatment — just monitoring twice a year.” In 2019 his liver enzymes rose; he started antivirals. Last year, encouraged by his physician, he began interferon. “I've seen too many people in their 30s or 40s present late. I didn’t want to be one of them.” He completed therapy and achieved clinical seroconversion. “From ignorance, to being deceived, to learning, to treating — and finally to clinical cure. That’s my path.”
Li says he has not faced overt discrimination from family or employers. “Most people were surprised. In our generation, almost everyone knows someone with HBV, so fear is less about malice and more about misunderstanding.”
He began filming short videos of his interferon course. “It wasn’t a big decision — just a personal record. I didn’t expect what came next.” Comments and DMs arrived from people deciding whether to try interferon; some started because of his videos. “One person saw my negative serology and went to the hospital the next day. He turned negative after three months plus three months consolidation.” Others formed a patient chat where they compare labs, talk through side effects, and celebrate milestones. “It’s been unexpectedly warm,” he says. Negativity exists too: “Some say I’ll inevitably relapse. I try not to carry that in my head.”
Asked what he wants people to know, Li is direct: “HBV isn’t terrifying. Misunderstanding is. Learn the transmission routes, follow the science, and act early.” He also points to policy gaps: “Interferon can cost ~40,000 RMB a year including tests. Reimbursement caps for chronic-disease outpatient programs are often only 5–8k. If side effects keep you from working, you can fall into a bad cycle. Raising caps or the reimbursement rate would really help.”
He will keep posting updates, including his one-year follow-up. “Early relapse can happen — maybe ~5% within a year. People are watching my results to make informed choices. Whether I relapse or not, sharing the data has value. If my experience nudges someone toward timely, evidence-based care, it’s worth it.”
Q: Could you briefly introduce yourself (age, occupation)?
A: I’m 36 (born 1989). I’m currently between jobs; after starting
interferon I stopped working and focused on treatment and follow-up.
Q: Where and how did you learn you had hepatitis B? What did you feel?
A: In 2007 during a health check for a sanitation card when applying for
work. At first my mind went blank; then fear — I didn’t understand HBV, information was
scarce, and I worried I might die young.
Q: How did the diagnosis affect work and life at the time?
A: The sanitation card was required for some jobs, so I feared being shut
out. Initially that was true for certain roles; later I found positions (factory,
restaurant) where it wasn’t a barrier.
Q: Early on you said you were deceived by a clinic. What happened?
A: I searched online and ended up at a private hospital that promised a
cure. I spent over 20,000 RMB across roughly a year with no improvement. I stopped and moved
to a public hospital.
Q: What did standard care look like after that?
A: In the public hospital, based on guidelines then, my liver function was
normal, so I didn’t need treatment — just semiannual monitoring. In 2019, when enzymes rose,
I started antivirals. In 2024 I added interferon and achieved clinical seroconversion.
Q: Why did you decide to try interferon after years on antivirals?
A: I saw many people present late in their 30s–40s. Interferon offers a
chance at seroconversion and may lower long-term risk. I didn’t want to wait and regret it.
Q: How did people around you react to your diagnosis? Any discrimination?
A: Family and friends didn’t treat me differently — mostly just surprised.
I think many in our generation know someone with HBV, so fear is lower. If discrimination
happened, I wouldn’t internalize it — I did nothing wrong.
Q: What’s the biggest public misconception about HBV?
A: The word “infectious disease” triggers blanket fear. People don’t know
the actual transmission routes — mainly perinatal and blood; casual daily contact doesn’t
spread HBV.
Q: Why did you start documenting your interferon journey online?
A: It was simply a personal record. I didn’t expect an impact. But many
viewers DM’d me; some decided to start interferon and turned negative. A patient group
formed; people share labs, side effects, and encouragement.
Q: Any messages that deeply impressed you?
A: I try not to hold onto comments — good or bad. Some criticize or predict
relapse; others share success after seeing my videos. The collective warmth of patients
supporting each other stands out.
Q: What do you most want to tell people living with HBV?
A: HBV isn’t terrifying — misunderstanding is. Learn the facts, follow
medical advice, intervene when needed, and live like everyone else.
Q: What changes would you like to see in societal support?
A: Better public education on transmission to reduce fear; higher
outpatient reimbursement caps/rates for interferon courses (total annual costs can approach
~40,000 RMB), so treatment doesn’t force people into financial stress.
Q: Will you continue sharing updates and HBV education?
A: Yes. I’ll post follow-ups, including one-year results. Early relapse
risk exists (~5% within a year), and people watch these data to decide. Sharing helps others
make evidence-based choices.
Q: If someone wants to participate in similar interviews, any tips?
A: You can find me on Douyin; there’s a patient group where many might be
open to research interviews — it’s a precise community of people actually undergoing or
considering treatment.
From speaking with people living with hepatitis B, we learned that the greatest challenges are not always medical. They are often social — fear, misunderstanding, and stigma that follow a diagnosis. All patients emphasized that misinformation about transmission remains widespread, and that the emotional burden of HBV can be heavier than the physical one.
At the same time, their stories highlight resilience. With regular monitoring, antivirals, or interferon treatment, many patients maintain good health and achieve clinical milestones. More importantly, through openness and advocacy, they are breaking down stereotypes and helping others feel less alone.
For us as researchers, these conversations were a reminder: any therapeutic solution must also be accompanied by public education and community support. Technology alone cannot solve HBV without addressing the human experience of living with the virus.
We are grateful to Wendy, Mr. Li and Mr. Lin for their honesty and courage. Their willingness to share personal journeys made us more aware, more responsible, and more determined to ensure that our project places patients at its core.