Roza was infected with hepatitis B as a child and now, as she trains to be a primary school teacher, she reflects upon life, work and relationships with a virus that many people still don’t understand. Thank you for sharing your story, Roza
I’m 36 years old and have lived with hepatitis B for 34 years. There are two possible ways I could have been infected. When I was two, we lived in an old, mouldy building. A company sprayed it, but the chemicals were too strong, and my whole family ended up in the hospital.
This was Poland in 1989 – the final year of communism – and the hospital didn’t use single-use needles. Then a year later my mum was working in the hospital and got infected with hepatitis B in the laboratory. When they checked the family, they found I had it too.
When I was a bit older I remember my mum telling me I had a sick liver and would need a blood test every six months, but to not worry. I didn’t, because they gave me chocolates after they’d taken my blood, so I was always quite excited to go! In 2011 I had a biopsy where my score was between F1 and F2, which meant slight inflammation and damage, although my blood tests afterwards were good which the doctors thought was slightly strange.
In 2013 I moved to the UK and continued having a blood test every six months. The results were always good, but since 2024 my viral load has been going up and down. One time it was 5,000, the next it was barely detectable. As a result, I had blood tests every three months and another biopsy – and the score was F0. My doctors said the virus sleeps for a bit then wakes up and it’s affecting my immune system. They wanted to put me on antivirals, but I was terrified because I’m an only parent and sole breadwinner. I started spiralling about losing my job and struggling to pay my bills. Now, in 2025, my viral load is high again, and they don’t want to wait any longer. I feel ready to go through with it—I feel like I need to prioritise my health first.
Immune system
I try to help my liver by having a healthy diet and not drinking or smoking. However, quite often I feel really tired without reason and have muscle ache and sometime feel pressure where my liver is. My immune system is working harder than in a normal person and I catch everything around, I had Covid three times and flu a couple of times despite the fact I’ve had the jabs.
There’s a lot of stigma around hepatitis B. Many people don’t know what it is or think it’s only to do with sexual contact or it’s the same as HIV. It’s upsetting and frustrating to have to keep explaining it. It’s 2025 and people should know what it is by now. Romantic relationships can also be difficult because hepatitis sounds so scary. Luckily my ex-husband was quite understanding, but I haven’t dated anyone for five years. I’m focusing on my child and work and I’m good with that.
Talking about illness is really stressful—not just hepatitis B—because people fear being judged or misunderstood. And finding a job can be difficult if you’re not 100% well
I would like to see more understanding, especially around applying for work. It’s a kind of stigma to be told you can do everything you want, but on the other hand… When I was 16, I really wanted to be a doctor, but thought I couldn’t apply and only found out that wasn’t true much later on. Talking about illness is really stressful—not just hepatitis B—because people fear being judged or misunderstood. And finding a job can be difficult if you’re not 100% well. When I applied to be a higher-level teaching assistant a couple of years ago, I had to answer health-related questions, including about hepatitis B. I tried to be as honest as possible, but felt uncomfortable having to explain my story to an interviewer. I was told I might be offered the role if I was in a stable condition but would have to let them know if anything changed. They did take me on and the people are lovely, and I’m now training to be a primary school teacher, but my fear is that a future employer could worry about me becoming unwell and hire someone without any issues instead.
There are a lot of opinions about vaccines too. My son was vaccinated immediately after birth and I believe vaccines are really important and protect us, but some people look at me like I’m from Mars when I say that.
It’s not an easy life. I’ve recently been diagnosed with PTSD, anxiety and depression and found the British Liver Trust by Googling when I was having a really bad day. I was crying a lot because I was worried about what would happen to my son if I was really unwell, because my parents are in their 70s and wouldn’t be able to come to the UK. I just needed someone to talk to and sent the Trust an email. They invited me to join the support group. It really helped, and it’s good to know the nurse-led helpline is there too if I ever need to talk to someone. I will also be starting therapy soon, so fingers crossed I’m on the right track.
Hepatitis B – Breaking the Silence
When the British Liver Trust asked me to be part of their Breaking the Silence report on Hepatitis B I agreed because it’s really important for people to know about the virus. A dear friend of mine didn’t know they had it and recently passed away from liver cancer. It was very upsetting and made me realise that could have been me in 10-15 years, if I hadn’t been diagnosed and monitored.
The Trust also invited me to share my experience at the launch of the report in Westminster in December 2024. There were MPs there, as well as professors and doctors and they talked about the latest discoveries that will be great for hepatitis B. I was then introduced and made my speech. The room was silent as I spoke and people were nodding their heads. I think it made them think about life and illness and what we can do to help others. They said it was even better than hearing about scientific discoveries because my speech was really personal. I really felt I made a difference and that felt so good.
If you are diagnosed with hepatitis B, listen to your doctors and stay calm. You will be ok. You can live with your liver like that until you are 100. I say this to people who are newly diagnosed and really, really scared and feel like their world is shutting down. It’s really not that bad and I am the example of that because I’ve been living with this virus for 34 years.
If you’re having a bad day and need to lie down, then lie down – your liver really likes it when you rest. If someone wants to disturb you when you’re lying down, tell them you’re doing it for your liver. Try to be happy and laugh a lot, because it will help you and your liver too.
