Mary, one of our Hepatitis Speakers, has written a guest blog post about her experience of living with hepatitis B.
I have lived with hep B for all of my life. Although this is a virus that can badly damage the liver, the worst thing about it has mostly been the lack of information about it and the behaviour of other people towards me when they find out I have hep B.
No one told me what I should do about having hep B
Until after a check-up for my pregnancy, I hadn’t known that I had hep B. Even then, no one told me what I should do about it, and so neither the doctor nor myself paid it much attention. I certainly didn’t know that my son should get a vaccination for hep B within 12 hours of his birth, so it was very lucky that he was not also infected.
The discrimination against my hep B status began to impact my friendships
After migrating, in 2000, to Sydney from China, a very good friend of mine offered tremendous support to help me with my settlement. Australia was such a new environment and her help was very much appreciated. But, one day, without warning, she just walked away from me when she saw me… and never spoke to me again. She instantly became like a stranger to me.
Then I realised it was because she must have known about my hep B status. She and I went to the same doctor, and I believe she found out through there. This hurt a lot, and I was very sad about the loss of our long-term friendship. After this, I never told other friends that I had hep B and, even carried my own cutlery (even though the virus cannot be passed on through a shared eating utensil!).
The health effects of hep B became too much for me
Later, I had a breakout of hep B, and my liver function tests showed that the virus might be damaging my liver. The doctor prescribed anti-viral medication, which helped to get my blood indicators back to normal. The doctor said I needed to take this treatment every day for the rest of my life, otherwise the virus would most likely become resistant to the medicine.
While I have followed the doctor’s advice, concerns over my health and the social pressures of living with hep B have had a dramatic effect on my personality. I became withdrawn and began to lose too much weight.
Joining Hepatitis NSW activities turned my life around!
Luckily, all this has now changed. I got to know Hepatitis NSW, joined in their activities with the Sydney Chinese community and even became a Hep B speaker! Having now acquired more knowledge about hepatitis, I am confident that people living with hep B can lead a long and healthy life. More so, I know that while those who have hep B should encourage people close to them to get tested, they also have the right to keep their personal health matters private.
I have shared my experience with a great number of people from different communities and a variety of backgrounds. This, along with being an active participant in dancing activities, has greatly improved my mental wellbeing. I’ve even regained that lost weight!
Published 10 September, 2020