Positive Life NSW

We have acknowledged our history and learned from it.
I speak more in relationship to my place in the Aboriginal community where we have acknowledged HIV. This has been a really positive process of achievement. The HIV epidemic for Aboriginal people had this positive effect-it brought sexuality up as an issue. Aboriginal and Torres Strait Islander gay and lesbian people now enjoy an increased freedom. And the experience of HIV is more shared across borders of sexuality and there have been some really good initiatives that have brought people together.

We are living in a changed time
The language we use is also important. Some terms started off with a certain connotation or intention. As time passes you have a different relationship with that phrase. I'm talking about ‘long-term survivor'. It started as a phrase that acknowledged people who had survived a period of time with HIV. Because we are now living in a changed time, we need to get on with our lives without that history. It would be a healthy and positive time to separate ourselves from that language. When I see the term ‘a long-term survivor', it's a comment about the people who didn't survive and I don't want to carry that anymore.

HIV burn out
Towards the end of last year I hit this point where I stopped taking my medication. I spoke to the doctor about it and the message was “you just have to do it”. It became a bit of a crisis for me; I stopped seeing him because of this. I'd lost a connection to the need to take it and I knew what the outcomes would be.

I spoke to someone about it and he said: “that's burn out”. When I heard the idea of ‘burn out' and that other people have experienced it, it took a big weight off my shoulders. To know this was a shared experience helped to normalise it.

I was overburdened with HIV on the one hand. Then making peaceful agreement with it on the other, and what it asks of you in order to make the most of your future- in my case taking the treatments.

I realise I need to take HIV with me. I do what it asks and get on with living. In this case, take the medication.

Giving HIV its place
Rather than saying “people have moved on from HIV” I think of it more as giving HIV its place.

I've seen relationships between brothers and sisters, where they live together in their older life. They might be opposites, or they don't particularly get on, but they've really found a way to cohabitate and exist in a way that benefits each other. My relationship with HIV is like that.

HIV is here for the long-run and we can place it and not allow it to take up more room than it requires. Everybody is different. Some people almost get a sort of pride out of being positive that's not me; but I'm not ashamed either. I don't speak openly about it. I only talk about it when it's of some worth or because I need to.

Keep looking until you find your place
Personal responsibility for the future is yours. Keep looking until you find your place. Find people you blossom around; visit the places that make you grow. You have to look for it and depression can put up a big resistance. Listen to yourself and what your spirit is trying to tell you. I was judging myself or assessing myself on factors like how much money I have or how much work I do. Don't look at what you can't do; look at what you can do.

One of the really big things for people living on the pension and who have survived is that through the course of time we did as a community say: “don't worry, we'll look after you, we'll house you, we'll give you money for food and we'll give you all these services.” Then the world changed after the introduction of new treatments in '96 and some of us who went on the pension got left behind.

I was on a carer's pension and when my partner died in ‘95 I had to make a choice about what I was going to do. I had left employment and it was an easy alternative for me, but I wish I'd thought twice about it. A lot of people are feeling that they've got trapped in welfare; the people who didn't have probably ended up in a more secure place.

Getting on with it (again)
The words ‘getting on with it (again)' that I came up with in the creative workshop on living longer with HIV have given me a new identity, like a new coat. ‘Getting on with it again' is about learning from our experiences, setting a direction and giving it a go, but it's not easy. When something goes wrong I deal with it in the moment and try not to take it into my future. There will be things to deal with. There will be things that you take with you and things that you leave behind. We learn from our experiences.

The “again” acknowledges those things that have happened in the past- the loss of our friends that had an affect on us and we got on with it, or our medications didn't work and we fixed them up and got on with.

Music and singing improve my quality of life
I've acknowledged the challenges HIV brings, through creativity- writing and music. I've looked at them and I've placed them somewhere. When I look at it and I can see it reflects the honesty of my experience, I feel lighter. So, it's not that I've got rid of the challenges, but I've looked at them and I've placed them somewhere. Music and singing improve my quality of life. It's the validity of what I do.

There are a lot of messages out there that aren't ours- messages about wealth, success, employment and how you should be living on a daily level. Because I'm not working full time, I took on some shame and it took me away from conversations with people because I was isolating myself.

Having a reason to get up
What motivates me? I like playing my guitar and being around other people. I really notice it when I'm not around people, I slip a bit. Even if I don't feel like going somewhere it's important to remember that when I'm around people it picks me up.

I'd like to see HIV positive people doing more things for themselves, even as a group. Acknowledge the support and move on - create some pride in other aspects of our lives and stop being at this place of being on the receiving end all the time, and it would be great if that could be shifted. I always thought a good initiative would be to have a coffee shop or a restaurant that employed positive people where you could get your two days a week, are paid and feel better about yourself.

The only time I saw it happening was when they had Performance Positive events. They were really good. They pulled some people together. And people felt very strong getting up in front of an audience and being well received. That sort of thing improves our lives.