Ben's Story 2010

How did you find out you had hepatitis C?

A nurse happened to mention it whilst I was attending an appointment on an unrelated matter. I think she assumed that I was aware of my hep C status, but I had received no notification to that point.

It was frightening and I was a little angry that I hadn’t been properly informed. This was in the early 90s.

How has hep C affected you over the years?

I have been unreasonably lucky, in that the only symptoms I've had to manage are fatigue and occasional issues around mental health and staying positive.

Keeping a positive outlook about the future was made a lot easier once I got a liver biopsy. The biopsy provided me with a clear picture of where I was at, and what was likely and unlikely to occur in the future. It helped me to choose the attitude I was adopting to my diagnosis. It took quite a few years to get there though.

At work, fatigue's the big bogey man for me. I find I really have to work hard and spend time exercising to stay energised. Otherwise things start to fall apart.

Also I have the occasional paranoia - "Who knows? What's their level of understanding? Have they bothered to inform themselves? Is this thing holding me back in my career?" That sort of thing. Every time you get a knock back, for a new position or something, you have to face down those demons.

My diagnosis was revealed to me after I had left home, and was living independently, so my family's understanding largely comes from the things I tell them.

They're OK, but don't seem particularly interested in talking about it. Maybe they assume I don't want to talk about it, that it's a private matter. Maybe there's a communication break down there actually.

Sometimes in the past, I have simply chosen to ignore it, put my head in the sand and made no concessions to moderation or better diet. At times I believe that may have adversely affected my relationships with people who care about me.

Disclosure issues with new partners have caused me a lot of worry too. "When's the right time to tell her? How's she going to react? Does she tell her friends? What do her friends say to her? Who do they tell? What's their level of understanding? Are they informed?" That stuff all over again.

Have you had hep C treatment?

The advice I've received is not to have treatment. The virus has been in my body for between 20 and 30 years and hasn't caused significant damage to my liver. I've been fortunate in that respect. It’s best for people like me to wait for treatment options to improve.

If you have learned one positive thing from living with hep C, what would it be?

It's powerful to inform yourself, and it's powerful to have a positive attitude. Try not to bury your head in the sand. I had a gloomier picture of the future than I needed to. Once I'd informed myself, I was able to take control. Ask for the help you need. Ask for the information you need. Don't give up until you get it.

Who or what has helped you to live with hep C over this time?

Talking things out with someone – regularly – has been a big help. At one point I took a significant amount of time out of the workforce. I accessed disability support to concentrate on my health, I committed to regular exercise. I made and attended as many appointments as I could and became informed about where I stood. I found out what support structures were available to me.

Where I could see that there was room for improvement, I joined my state Haemophilia Foundation so that I could lobby for change and work collectively with others who have similar concerns.

Being proactive, informing myself and talking about things have helped me get back on track.

What do you think is different about having haemophilia and hep C?

Having haemophilia means managing a whole range of things: joint pain, bleeds, mobility challenges, co-infections, social isolation, mental health challenges, relationship complexities, medications, expenses associated with chronic illness, work issues.

When you add hep C complications to the mix, it can be the straw that breaks the camel's back. It's also in this context that treatment side effects can overwhelm a bloke. Support is absolutely crucial. Going through this stuff alone just isn’t an option.

When you look to the future, what do you think is the most important thing for you in relation to hep C?

I need to ensure that my health challenges do not become the dominant theme in my life. I need to focus on having a good quality of life, within the confines of what possible.

I can achieve this when I eat well and exercise regularly, when I have employment and am productive, when I have stable accommodation and a place within a community that values my contribution.

The most important thing in relation to hep C is that I am able to access to help, so I can create these things.

*"Ben" is not the author's real name
Last Updated: 15th May 09