Positive Life NSW

Ben

I was diagnosed with HIV in 2006 at the age of twenty four. I went back to my doctor for a routine health check and found out I had Hep C. I felt further and further away from my community or what I perceived to be normality. For me, there was a different stigma attached to Hep C than HIV. I think HIV is a lot more public or visible in the gay community than Hep C. There’s also more support with HIV.

Hep C is more stigmatised in the general gay community, and especially in the HIV community. With positive guys it’s like: “You’ve got Hep C - I won’t touch you”. My straight friends are much more comfortable talking about it because someone they know had it, like an uncle. With HIV I’m finding a lot of guys my age are a bit more shocked because they don’t know anybody else who has it.

The stigma of Hep C is mainly based around intravenous drug using. I’m completely needle phobic, so that was not my story at all. My doctor told me I got Hep C through sexual contact, which was quite a surprise because I didn’t know sex was a risk for Hep C. I’ve heard of a few other guys who caught it through sexual transmission. Like me, they were into fisting, drugs and lots of unprotected sex with guys. At that stage I was taking a lot of drugs and my inhibitions changed – my boundaries changed. On crystal I did things I wouldn’t normally have done.

I’m quite knowledgeable of how I got myself into this situation. I was a very depressed person during a lot of that period and put myself in a lot of risky situations. A lot of my young friends are into that kind of thing. Since my diagnosis, they have fired a lot of questions at me about HIV. Before this they didn’t want to know. I remember before my HIV diagnosis I’d get to the section in the Sydney Star Observer where they had the Positive Living insert and flick through it quickly. Ignorance is bliss especially with people my age.

Jumping straight in

I didn’t know what it was going to be like to have Hep C while I knew a little bit about HIV. The second thing my doctor told me was there’re a lot of guys who’ve had HIV for a long time - long term survivors. So he was giving me a bit of hope. However, when he gave me the Hep C diagnosis the first things he talked about were treatments, liver biopsies and the harmful impact it could have on my body.

I didn’t tell anybody for a long time and kept my diagnosis to myself. I tried to find information on the Internet, however the information I got from my doctor, social worker and places like ACON was more useful and less negative.

I realised I needed to pay more attention to my body and soul. I needed to become knowledgeable about what was going to happen with regard to my health and well-being. My doctor suggested I look at treatment for Hep C within six months of my diagnosis.

All around this period I was working nine to five, five days a week in a corporate job. I didn’t have time to prepare for treatment at all and jumped straight in. I didn’t start HIV treatment because my doctor’s idea was to try and treat the Hep C first.

It’s not me, it’s the treatment!

The six months on treatment was the worst six months I’ve had in my life. It didn’t work and that’s when I had an emotional breakdown. They never gave me any guarantees because of the type of Hep C I have – genotype 1a, which has a 25% success rate. I really pushed myself a lot further than what I should have. I had financial commitments, and that was a priority, rather than my health. It’s taken me a couple of months of counselling to feel comfortable expressing any of this to my friends even.

I withdrew from everybody, my friends and my family. There were very few people who knew what was going on until I lost it. At that point I needed to tell my folks because I needed their support. I needed to tell some of my friends so they could understand why I had been distant for the last twelve months. They were all fine and have all been really supportive.

I started questioning why I was acting so different towards people that I love, people I didn’t know and people at work. Because I didn’t understand what was going on I got even more depressed and suicidal. My doctor said that it was possible that I would experience side effects, but I thought I was strong enough to overcome them. I went into counselling and my social worker and I got to the root of the problem. It wasn’t me it was the side effects of the treatment. I wasn’t giving enough thought to the fact they were causing my personality to change.

Preparation is important. It’s important to talk to somebody who has been on treatments and to get access to information on what to expect. I also needed to express how I felt and get more help especially with what was going on inside my head. Finding a good social worker really helped. I was able to get a bit of perspective on the situation rather than internalising it all.

Lethargy was another thing I had to deal with. I went from getting up in the morning, going to work, coming home, taking my dog for a run around the block a couple of times, to not being able to get out of bed. For a twenty four year old man to go from being physical to feeling like an eighty six year old was a shock.

Time to make changes

I’ve quit smoking; I’ve become a light social drinker and no recreational drugs. These have been the three major lifestyle changes.

I used to be a bar tender and went out socialising and drinking a lot, so that was definitely a problem at the beginning. I realised I could go out and have one beer and still have a good time. Every now and then you can plan a good night. If you say you’re never going to do any of those things ever again then you end up doing it ten times harder.

I quit my full-time job and went on government benefits - Newstart - which I found out I could get because I was on treatment for Hep C. I could have helped my situation earlier on if I had have known about Newstart and found support and information. Newstart doesn’t cover everything so I had to work out a way of getting out of my situation and to survive. I was working in a job that I enjoyed, but it wasn’t my life or passion. I really wanted to do something creative. Since then I’ve started up my own clothing company. It ended up being a really positive time to reassess my life and my outlook on everything.

Don’t do it alone

Counselling is important and talking with people helps when you’re overwhelmed with everything that’s going on and you can’t see a way out. The fact is a lot of people going through treatment are successful and clear it from their systems. Talk to your doctor and get access to current and accurate information. I mean there’s a new drug in the US they’re trialling for Hep C. I’ve been told to wait about five years and there should be something else.

I had no idea about treatment and counselling options. I had no idea about government support options. I was surprised at how many other people are coinfected with HIV and Hep C. Before I found out that I had Hep C, I’d met people with HIV and I’d met people who had Hep C, but I’d never met anybody who was coinfected. Meeting other guys in the same situation really helped me to reassess everything.

I’m going to continue with my clothing business. Getting a Hep C and HIV diagnosis has changed my life in such a dramatic way. I’m not going to be able to run a marathon however; I’ve learned to take things as they come and to readjust my life to do the best I can.

Ben was interviewed by Kathy Triffitt for the forthcoming fact sheet on HIV and Hepatitis C.