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Two Aussie men on what living with HIV is really like

Abby found out she had HIV through a nasty text message from a man she briefly dated. Despite the horrible way she found out about her condition, Abby says she hasn’t been victimised or discriminated against and having HIV hasn’t affected her dating life.

But this isn’t the case for Steve and Theo*, two Aussie guys also living with HIV. It’s cost them jobs, friendships and their mental wellbeing. They’ve shared their stories with news.com.au.

STEVE VAUGHN

Steve contracted HIV in 1997. He’s from a regional town and says there wasn’t much suppor

Steve contracted HIV in 1997. He’s from a regional town and says there wasn’t much support, understanding or information available back then. Source: Supplied

“I was diagnosed in 1997. I contracted HIV through the girl I was with back then. We’d been together for about 5 or so years and she became really sick all of a sudden. I took her to about three or four doctors and they couldn’t figure it out. Eventually we split up, things got a bit too hard.

It was probably only a couple of weeks afterwards that she had three seizures and was admitted to hospital. Her mum told me that she had been diagnosed with HIV and told me to get tested. [My ex-girlfriend] had had it for more than 10 years but she didn’t know. I was told she didn’t know she had it up until then and I’d like to believe that’s the case. I’ve got no suspicions or reasons to believe otherwise. So I got tested and it took a while but I was positive too.

I found telling people really difficult. Every time I told anybody it would come back to bite me. Clients would say, ‘Oh that’s terrible’ and then you’d get no more work from them. Work started to dry up and it cost me clients, money and friends. People don’t say anything to your face but I’ve heard people have said some nasty things behind my back.

The side effects of the [HIV] medication are just endless. Being lethargic, you can’t sleep, diarrhoea, and weight loss are just some of them. Your body shape changes. The chemicals we have to take to keep this thing at bay are pretty horrendous. I had to get a bone density scan recently to see whether it had started to affect my bones.

When I was younger and trying to meet people, it was really difficult. You think, ‘What do I do? Do I tell this person [I have HIV] straight away, on the first date? Or when I start having feelings for them? Do I just let things happen and tell them later?’ When someone would try and make a move I would pretend I was going to the toilet and do a runner because I was scared of telling them. I’d prefer to tell someone upfront, not down the track. It’s a difficult situation.

My wife and I have been married for a little over three years. We met on an online dating site for people with sexually transmitted diseases — she has HIV too. People call us ‘the AIDS couple’ behind our backs.

I never set out to try and deliberately get an HIV positive partner. That’s not what happened. But I’ve been with a few partners in the past and in the beginning they say [me having HIV] isn’t going to worry them but then it eventually does.

Having a positive partner, you don’t need to worry about that sort of thing. We both have the same issues and we deal with them together. We travel the same road. We both experience the same things. She’s lost a sister to AIDS. We just get it.

What I find really hard is that because I am not gay, I’m not a needle user and I caught HIV off a female, I’m in the minority of the minority of all people. I’ve only met one other male in my situation and that took me 13 years to find another male who had contracted HIV the same way that I did.

The hardest thing for me is ignorance. Ignorance from doctors, Centrelink, health professionals, everyone. People think you’re walking around with this highly contagious disease and we can’t be touched, we can’t be hugged. They assume you’re a needle user or you’re gay. No one ever stops to ask you how you got it.

When people are rude to me I just say to them, ‘Oh, so you’ve never had a root without a condom?’ and they think ‘Oh, right, yeah I have’. I say, ‘Do you know your status? Have you had an STI check?’ It does make some people think.

When you get to the bigger cities it seems to be much more accepted but once you’re out in regional towns like where I’m from, you’re much more on your own. It’s probably a lot harder for people like myself who were diagnosed 20 years ago, because in the early days there was no support at all. It’s a life altering thing. This battle doesn’t go away. It goes on until you die.”

THEO PAPAS*

What living with HIV is really like

Theo was diagnosed with HIV four years ago. He says HIV is common among his peers. Source: Supplied

“I was diagnosed with HIV in April 2010. I contracted it by having sex without a condom. I was very familiar with HIV anyway because I had lots of HIV positive friends. When I told one of my HIV positive I also had it, he was like, ‘I’m not that surprised’. In those inner city circles in the gay community it’s quite common.

I’m sure my experience is definitely not as bad as other people’s. But on the flip side I didn’t receive a lot of support because the people around me were so used to seeing people with HIV and they thought it was normal.

The biggest challenge I’ve faced is treatment-related depression. The first drug I was put onto in early 2012 cause really severe depression. It’s called Atripla. There are three drugs in that one tablet and one of the drugs — Efavirenz — caused really bad depression within a few days. Looking back, I probably wasn’t super happy before I started taking it, but I was functional. When they first prescribed me the drug they said depression was not an unusual side-effect. In fact probably the majority of people on it have had some kind of psychological side-effect.

It’s been a very steep learning curve for my parents, my mother in particular. When I was really depressed I felt quite isolated from my mother. She’s said some things she doesn’t mean. She wanted to help but she didn’t know how to. People aren’t always nice or understanding. I was living with a close friend of mine and he kicked me out when I was at my lowest.

Because I’m pretty public about having HIV and I work with an HIV organisation, I think it’s pretty obvious that I’m HIV positive. I think being open about it has made it more difficult for me to find employment. It’s on my LinkedIn profile and stuff.

When I talk to recruiters … sometimes there’s a subtle change in their tone when they figure it out from my past work experience. I was talking to a recruiter on the phone the other day actually, and it sounded like she had a role in mind for me. She started asking about my availability and then we got onto my work experience with HIV organisations and then suddenly she was like ‘Oh, we don’t have anything available right now’. There was a definite shift in her attitude.

What is AIDS and HIV

What is AIDS and HIV

I’ve had one experience where I was working for a large company in a call centre. I told them about my HIV status and they were really cool about me going to treatment and to appointments, using time off in lieu. I worked the extra hours I missed at the end of shifts. My managers changed about five months later and I was told I couldn’t have that flexibility anymore. I had to take annual leave to go to my appointments. I knew that was against their policy. I held a meeting to discuss it and they said they understood my point of view. A week later, just before my 6-month probation period was up they dismissed me. They just handed me a letter without any warning. It said something really vague about “issues around misconduct and poor performance”. They said, ‘Can you pack up your desk and leave now please?’.

About 6 months afterwards I came across the Anti-Discrimination Commission in Queensland, in the course of my work. I mentioned what had happened to them and they said, ‘It sounds like you’ve been discriminated against’.

They helped me out, along with an LGBTQ advocacy group in Queensland. It went through a conciliation meeting. We lodged a complaint with the Anti-Discrimination Commission against my old company, also because that same manager asked me if I was gay in the interview process, which they’re not allowed to do. It was settled outside of court. I received some financial compensation and they also issued a statement of regret. Not an apology, I must stress, a statement of regret. It was basically just one line saying, ‘We acknowledge that Theo experienced hurt and distress and we regret that’ or something else really generic.”

I actually see HIV now as a blessing, really. After a lot of hard work and problems, it forced me to find a way to feel better about myself. Indirectly it’s made my life a lot better, but only after a lot of hard work.”

*Name has been changed for privacy reasons

 

SOURCE: news.com.au

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