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She was 24, young and healthy. And she was diagnosed with Hepatitis C.

Justine was 24 when we was diagnosed with a condition she knew nothing about.

By JUSTINE DOIDGE

“Infected”, “virus”, “disease” and “chronic” are not words you want to hear sitting across from your GP, not at any time, but especially not in your early twenties.

I’m now 44, but those were the exact words I heard some twenty years ago when I was diagnosed with hepatitis C at age 24. I had no symptoms and the thought had never crossed my mind that I may be living with a chronic blood disease that, if left untreated, can (at its worst) lead to liver disease or even liver cancer.

It was a routine blood test, a general all-over check-up to make sure everything was in working order. I was at a friend’s house when I called the clinic to find out the results. “Yep, all good. Everything’s looking fine” the nurse said down the phone. “Oh, what’s this down here” she went on “you’ve tested positive for non-A, non-B Hepatitis (now known as hepatitis C)”. Those three words, “You’ve tested positive” which were said so casually, instantly changed my life.

My first thought: “What does that even mean?”

My second thought: “Am I going to die earlier than if I didn’t have this thing?”

I scheduled a doctor’s appointment, hung up the phone and went into the next room and cried. All I knew is that I was now living with something.

Although hepatitis C is a serious condition, it’s slow acting and more often than not symptoms don’t show for many years. I was told that it would affect me later in life and treatment was something I could consider later down the track.

Although I acknowledged the diagnosis I was in my twenties and had bigger priorities, so I put it to the side. I wasn’t experiencing symptoms, there was no awareness around hepatitis C at that time and there didn’t seem to be any real urgency to get treated, so I got on with things. I travelled, moved to Sydney (originally from NZ) and started to explore my new stomping ground.

It was over a decade later, in my late 30s, when I decided to get better acquainted with the condition I had been living with for almost half my life. I began evaluating my life and my priorities.

It was time for me to start taking care of my body, a body that had served me so well for 37 years, a body I had punished in my younger years living a fast and hard lifestyle, a body I now needed to pay attention to.

I found a healthcare team that became an incredible support network. I began treatment and (long story short) was able to clear the virus five years ago in 2008, which I am very fortunate and grateful for.

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Science and treatments have come a long way – with the latest options available, the first in in about a decade, chances of achieving cure rates are higher than ever. There is still however, a great deal of work to be done in terms of social attitudes and the stigma that still unfortunately exists around hepatitis C.

I’ve been pretty lucky, I’ve had a very supportive family and have been able to be open and honest with close friends. But I do consider my hepatitis C diagnosis a secret part of myself and a dark part at that. Not because I think it’s a negative representation of me as a person, but because of the way it is viewed in society and the stigma attached to it.

“There’s so much support available these days and treatments are advancing so there is certainly hope (and I’m proof of that)!”

Being diagnosed with a condition like hepatitis C forms such a huge part of your identity, yet there is an overwhelming level of secrecy around it for fear of judgment, which can be crippling.

On one occasion I was even told by a Dentist’s office I would have to be the last appointment of the day so the equipment was ‘clean’ for the other patients. Not only is this completely idiotic (shouldn’t the tools be ‘clean’ for everyone?), but shows that misunderstand and ignorance around hepatitis C is still rife in society. Although I knew this made no sense, I was made to feel different. Separate. Not like ‘normal’ clients. It made me feel like I was dirty.

Dating is a whole other can of worms in itself – when is the right time to tell someone you have / had hepatitis C? The first date (too much, too soon?), the second or third? I’ve experienced both very understanding and positive reactions which have been hugely comforting, but there have been instances where the ‘fear factor’ and lack of knowledge have reared their (ugly and disappointing) faces, and this has not ended well.

My message to people who think they may be living with hepatitis C or who may be diagnosed but too scared to seek help / medical assistance – knowledge is power. There’s so much support available these days and treatments are advancing so there is certainly hope (and I’m proof of that)!

You don’t need to carry the fear that others might have, for as many people that don’t understand (and I believe this comes down to fear and lack of knowledge) there are as many that do and care and are here to help.

Building a support network of friends, family and healthcare professionals is key. There has never been a better time to have your liver health checked. The earlier testing, diagnosis and treatment can get underway the better. Remember, you are not alone.

Justine is passionate about raising awareness of hepatitis C and de-stigmatising the condition. She now works with Hepatitis NSW as a peer counselor and public speaker, aiming to promote knowledge and understanding about the condition. For more information on hepatitis C please visit Hepatitis Australia  or call their National Hotline 1300 437 222.

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