NSW HEPATITIS INFOLINE

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

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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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