stigma Archives | Hepatitis NSW

The worst thing about hep B isn’t always the virus

The worst thing about hep B isn’t always the virus

The Worst Thing About Hep B Isn’t Always The Virus

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 I became withdrawn and began to lose too much weight.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

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Hep C Diagnosis & Stigma: I Was My Own Worst Enemy

Peta, one of our Community Peer Workers, has written a guest blog post about her experience of living with and being cured of, hepatitis C.

It is likely that I had hep C for three or four years before I was diagnosed with it at the age of 21. I didn’t know much about the virus then, just that it was something you got from sharing needles and that there was a lot of stigma around it.

I had been drug-free for almost two years when I heard that my ex-partner had tested positive for hep C. This meant, I realised with a knot tightening in the pit of my stomach, that I was very likely positive too. However, I didn’t get tested right away.

The stigma attached to hep C made dealing with potential diagnosis hard to cope with

I had grown up in a conservative family; I was a “good girl from a good family”. My earlier drug use had affected my relationships with my family and friends, and I thought I knew how my family would take the news that I had hep C. In my mind, I believed they would assume I was using drugs again. The stigma attached to the virus – not just in the wider community but also within myself – made dealing with my potential diagnosis quite intimidating and extremely hard to cope with.

Instead of facing the situation head on I started drinking. I pretended nothing was wrong. My drinking got heavier and more out of hand.

Deep down, I knew I had the virus; and I also knew I was probably making myself sicker by drinking as heavily as I was. I now had a serious mental health issue and a whole new dependency to deal with. It was making me twice as sick because of my undiagnosed hep C.

I was so terrified of facing my situation

Part of me knew I had to do something, so I started going to doctors. I was so terrified of facing my situation, and the stigma surrounding it, that every time I got tested, I pretended it wasn’t happening and avoided the results.

In total I had about six different tests from six different doctors… and each time I refused to pick up the results! This went on for maybe six months to a year, and all the while I kept drinking more and more.

Finally, I broke. Maybe it was the various doctors’ surgeries constantly ringing me to come in to get my results. Maybe I was coming to the realisation that I couldn’t live as an alcoholic anymore. I knew I was going to die slowly and painfully if I didn’t face up to the situation.

Starting treatment turned my life around

In 2001, I finally got tested and was diagnosed with hep C.

Because of public and personal stigma around the virus, not only did I delay my treatment, I put unnecessary stress on my liver, and I had estranged my family and friends even further. Plus, I had another dependency to deal with.

I started interferon treatment for hep C in 2002.

Interferon was a tough treatment to complete. The side effects were intense! I was surprised how supportive my family and friends were. They were proud of me for facing up to my situation and admired the strength it took to complete the treatment.

I was my own worst enemy in my journey with hep C

Now, looking back, I realise how much time I wasted and how much stress I put myself through. The virus may have affected my body, but the stigma I had attached to it created mental health issues that took years to heal and caused a dependency that I might have avoided had I sought help straightaway.

The stigma hurt me far more than the virus did. For a while, I had been my own worst enemy. But I’m now 18 years sober, I have a little boy and a happy healthy relationship with my partner and my family. To anyone who thinks they might have hep C, I’d say get tested right away. The treatments for hep C these days are amazing – effective, discreet and easy… don’t let stigma get in the way of getting cured.

Learn more about hep C by getting in contact with our Hepatitis Infoline on 1800 803 990,
or download one of our free online resources.

Published 2 September, 2020

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