I started injecting amphetamines at sixteen. They were like anti-depressants. Drugs simplify life in some ways. They gave me something to think about, to drive for, and most importantly, they muted the suffocating depression that was a legacy of my childhood.
I was diagnosed with hepatitis C in 1992, yet the diagnosis did not impact me. In 1998, I had my first flare up of hepatitis C and I felt unusually fatigued. It was the first time I realized that hepatitis C could potentially cause me serious ill health. It gave me a hell of a fright.
We all handle our health differently. Some people prefer to know as little as possible. I wanted to know what I could do to manage this disease. I enrolled in a course which introduced ideas of diet, meditation and self-management. My ALTs settled and my specialist started talking about treatment.
I went into treatment for the first time in 2000. After 10 days, my specialist instructed me to come off treatment due to what he believed to be a reaction to Interferon, but I believe I had a severe panic attack brought on by a lack of support.
After my son was born, I had another severe flare that lasted 18 months. Before my son’s birth I didn’t think about hep C much. I could sometimes go months without giving it much thought. After the birth and the subsequent flare-up, I think about it every day. I wish I could go back to just forgetting it was there. But I can’t.
Once the flare-up settled, I found a new specialist who encouraged me to undergo re-treatment. He was an amazing source of support. He also referred me to a psychiatrist for anti-depressants to stem any possible panic attacks this time around.
I started treatment, but didn’t tell many people. Over the years I have only told my husband and very close friends because I don’t want to be judged by my behaviour 28 years ago.
However, during treatment I found an online support group called Hep C Australasia. The site brought together an amazing community of people with hepatitis and gave us a forum to discuss treatment, discrimination, fears, successes, gardens, kids, dogs and anything else you can think of. These people shared my treatment journey with me.
I had to finish treatment 8 weeks early at 40 weeks as I got Tinnitus. I relapsed.
People have asked me if I would do treatment again. I would in the blink of an eye. Treatment is a relatively short time in your life. It is absolutely worth the effort if there is a chance of clearing. But could I go through a relapse again? That’s a different story. The hardest thing about the relapse was the loss of hope. I’m not sure I could take another blow like that.
Like all relapsers and non-responders, my sight is on the new treatment regimes with the protease inhibitors and polymerease. I would say now that I am cautiously interested in treatment rather than naively optimistic.
It’s easy to be simplistic and say if I didn’t have my hep C that my life would be perfect although I am sure that’s not the case. How do I feel about it? Hepatitis C is like a dysfunctional family member that you have to make peace with when you would rather run screaming from the hills. I hate hepatitis but it is a part of me – for better or worse.
Share your story now
For people living with a hepatitis condition, it really helps to know theyu2019re not alone. Thatu2019s why weu2019re inviting people to share their stories.