A brief story about hepatitis C

I was infected with hepatitis C in about 1981.  I say “about” as it was a pretty messy period of my life, and there were many times during my adolescence and young adulthood where I could have been infected with hepatitis C.  I had injected drugs for several years, and while my buddies and I tried to inject in as clean a way as possible – for no reason other than not getting a “dirty hit”. In 1981 three of my housemates all came down with jaundice, and a diagnosis of non-A non-B hepatitis. I didn’t get jaundiced and didn’t get tested until 1993.

By 1993, my injecting was a thing of the past, and I was working for the AIDS Council.  Hepatitis C had been named, and as several of my friends had been diagnosed, I thought I would get tested for hepatitis C.  I wasn’t surprised when I found out that I had hepatitis C.  My doctor, who didn’t know much about the infection was honest, and suggested that together we could learn about how to respond to the infection.

Living with hepatitis C was pretty simple for me, and in fact I made a living out of it, by advocating for people with hepatitis C at a national level with Hepatitis Australia.  I found that telling my story had power and could personalise hepatitis C for a range of people including politicians and people working for government and national non-government organisations. 

There were times though when I would get completely exhausted, which I put down to getting older and the stress of my job. But there was also the knowledge, sitting and watching from the back of my head, that hepatitis C could be a progressive illness and could be doing damage to my liver.  In spite of this background anxiety, I was a terrible patient – and rarely got my liver monitored. 

I did investigate interferon-based treatments a couple of times but was put off by the significant side effects of the treatment, and that I didn’t want to jeopardise my emotional and mental health. I had a responsible job, my life was relatively stable, and while I would have liked not to have been infected, it just wasn’t worth the risk. I also was not interested in injecting myself – I’d had enough of that when I was growing up and didn’t want to deal with the psychological challenges, which that could have raised.

In 2015, everything changed.  Information came out that hepatitis C could be cured. The cure, while expensive [at that time] had few side effects, was in a tablet form and you only had to take the tablet for 3 months.  I was cured in 2016 after 8 weeks of treatment.  

While hepatitis C hadn’t had a big impact, being cured has been wonderful.  A couple of months after I was cured, I cut my hand at work and realised that if I was ever bleeding heavily, I didn’t need to tell anyone that I had a blood borne infection. It felt completely freeing and all the while I was relishing in knowing that I had gotten rid of an infection that could cause liver cancer.