NAPWA

Work

Daniel

Initially I really did not believe that I would work again ever, and I still believe that the stress that work causes, especially full time work, does bring people’s health down. My first reaction was that I did not want to feel the pressure that work gave me.

I took leave sick leave when I was diagnosed. I tried a return to work a month or two later, and I pretty quickly found that I was not coping with it. I also found that the support that I hoped for, and the changes I thought I might be able to make in my workplace were not going to come about. Luckily I was able to take leave with some pay for a while. That was a great relief because I could actually take some time out to think about it.

I still don’t believe I will ever work in the way I did before, where you are focussed on a career and it is consuming and stressful. I do not necessarily believe that I won’t work again, it will just be in a different way. I am more conscious of my health now and I put a lot more thought into how I want to live my life.

Rob

I decided to work part time because I’ve had some pretty major health scares and my energy levels were appalling for a long time. I just couldn’t entertain the thought of full time work. The health care card is my primary concern. If I was to work four days a week that would negate the health care card, and I would have to confronting to paying up front, 30 bucks per script. When you’re filling in half a dozen to eight scripts a month it’s going to get very expensive. However, there’s a safety net there, you can access free drugs through the Sexual Health Centre. A lot of us are in low paying jobs and my experience is that for those who are working full time, having to pay is a real burden.

Ian

In 2001 I was just starting to get well again after being very ill, and I thought, I’ve benefited so much from PLWHAPerson (or People) Living with HIV/AIDS. and the AIDS Council I should really volunteer. I volunteered with PLWHA and it gave me this amazing fulfilment, this sense that I might be able to do something worthwhile. I was clawing my way back to health and work. Now I’m working at a community health centre and I’m loving it.

I told my employer I have HIV at my interview — I had to explain not working for three years. They give me plenty of leeway; they let me work out my own hours. If I’m feeling too sick in the morning, I ring up and say I can’t come in. If I think I can handle, it I’ll go to work and just warn my workmates: ‘Look, I’m not the best this morning. If I disappear, that’s why’. They’re all aware of it and they’re pretty amazing.

The transition from the disability pension to work can be difficult. When I started doing a bit of work, that was okay, because it just reduced the pension. Then I got to a point where I was offered this extra work at a pub. That meant that to make an extra $200 or $100 a week, I was going to push over the limit and lose my benefits, and lose more money than I was actually making in the extra job. I had to make the decision that I wanted to be independent no matter what. It was difficult to make that decision, but it was about taking back my independence, taking back how I feel about myself. That’s a bigger thing.

Gavin

I’m going to make sure that I keep myself healthy so that I can stay in the workforce. I’ve negotiated to work nine days a fortnight. They’re keeping me on as a casual and it means I get more actual dollars than if I was full time. For me that’s really comfortable.

I work in the health area and I’m also looking at studying in some field of health. If I don’t stay in health I would like to study economics, because I’ve always had a fascination with it. Work fulfils me in a way because I’m actually putting something back, being active within society. And it’s like I‘m defeating HIV. It means HIV is not the major focus of my day to day living.

Harry

When I got sick and was medically retired from my job, it was horrible. I got offered money, but there was no support. After that, I made a lot of changes in my life. I learned a lot more about myself. I learned that if I lived three days, three years, or thirty years, I could actually still do things that are meaningful to me. After a couple of years, the job was not that important any more.

I started a new treatment regime in April last year and within about three weeks I noticed that I was having severe mood swings and that I would cry at the drop of a hat. I was doing two jobs at that time. I did some research and found that the mood swings and depression were related to the medication. I actually had a mini break down. I resigned from work, stopped the medication and within four weeks I got my life back. The interesting thing is that I had got onto the same treadmill I was on before I got sick the first time.

Work is about doing something that is meaningful to you, if you can. It does not have to mean paid work. You can volunteer, or you can go back to college. There are so many things that you can do.

Leo

When I first started working, I was a bit lukewarm about it, even though it was only two days; but now I have really got the energy and the enthusiasm to work because I enjoy it and I can feel that I have a greater capacity than I thought that I had. It is also about exploring myself, challenging myself. I’m living on a property now, which is a completely new experience. I have to deal with machinery and animals and solar power and water tanks and all those sorts of things. I never thought that I could do all that, but I love it. It has been a big confidence booster.

Marie

I didn’t work for about seven years after my diagnosis, and then went back to work three days a week. I loved it. I felt that, even though it was working in an HIV organisation, it was giving me time to be myself rather than someone’s partner, someone’s mother. I do lots of volunteering, which has been fantastic. It’s given me opportunities to meet lots of different people and feel like I can have a voice in what affects my life.

Play

Rob

We’ve encouraged lorikeets to come into the garden and to watch them each day for even five minutes is wonderful. We’ve re-done the back garden and made it like an outdoor room. We entertain friends at home, at least once a fortnight. That can be cheap and cheerful, or an extravaganza, depends on the finances.

Jim

I do dinner parties. I go to the gym. I go walking. I love the beach, I do that a lot. I love reading, go to the movies. I go rock climbing. Just normal old everyday things. I’m quite happy being a boring old fart at this stage of my life. I’m quite happy staying home.

Dave

I’ve just had a year off living outside of Sydney — just taking a year out. A year away from the big smoke really cleared my head. I was staying on a farm way out in the central west. Didn’t have animals or anything, I just painted the house. Become a house husband if anything, because it was with this girl that I’ve known for twenty years. She went to work and I looked after the house. Became the woman I’ve always wanted to be.

I still take recreational drugs and stuff like that. I don’t go out and party, I just like to take them and wander around and laugh at people. Just generally have a blast. Discos and that, they don’t interest me, bright lights. I’m going to the show on the weekend, we’ll be drug fucked there. That will be good.

Angus

Things I do for pleasure can include activities like going on a bush walk, sitting on the veranda watching the sunset, observing the birds. I find getting stoned pleasurable, dancing I find really pleasurable. I take Ecstasy and Acid about five times a year. Every time there is a dance party I enjoy in taking half an Acid tablet or half an E and dancing my feet off for six or seven hours.

Money

Sara

Because my husband is from overseas and isn’t yet eligible for the pension, I’ve been supporting our family of three. Financially, it’s really hard. I would like to have things like a newer car or a holiday where I can stay at a hotel instead of lobbing at a friend’s house, but really when it comes down to it, they’re not the important things. I have what’s important around me all the time.

We get by. We really don’t miss out on a great deal. We get some free services and the support services put on free social activities. Luckily we get medications provided free by the Sexual Health Centre.

You do the best you can. Pay bills first and have food in the house; the rest has to come later. Normally with bills if you know you can’t pay them on time, you can tell the company and work out a plan for paying.

Bill

The first couple of years I had HIV I didn’t apply for the pension, because I had a bit of money. I knew I couldn’t work, but I come from a working class background — you just kick yourself in the bum and get on with it. My doctor finally made me do it, thank god. Then, when the money started to whittle down, I sold the house and went to a cheaper suburb to live.

I’m not interested in the things I used to be, like travel and beautiful clothes. As long as I’ve got enough to feed the dogs and look after them and myself, I’m alright, I certainly don’t have to scrape. I manage, if I’m careful.

Andre

I’m pretty good at managing my money. I utilise the food pantry at the Positive Living Centre. I don’t have that many expenses. I live in public housing. I’ve been buying all the utilities, really good ones, as I can afford them. I get $50 taken out each month and put into a special account. That accumulates surprisingly quickly. You only need $1,500 to get to Europe and back and once I got there, I still had the pension to live on and I stayed with relatives.

Marie

When I was first diagnosed, I applied for public housing, thinking it would be cheap and I’d be dead soon anyway, so it didn’t matter if I was stuck in a ghetto somewhere miles from the city. But when I moved into a place, it was atrocious. Then I realised how important having a decent house is for your quality of life. Some time after my daughter was born, we moved out of public housing and into this special assistance scheme. We managed to get a nice house at an affordable price.

Sometimes I think people are scared to access the support agencies that give you financial assistance because of the stigma or pride. At first I thought, ‘I’m not sick enough to access services’, but I swallowed my pride. Really, I do need to access them so I don’t get sick. I had to change my thinking about it. Last week my fridge broke down and I got assistance to pay for the fridge mechanic. It might be a small thing, but it helps me survive. We’re dependent on my husband’s income and that’s quite average; we just make it through every fortnight. I’ve got friends who’ve separated because it was easier to stay on the pension and get access to treatments.

Gavin

I get a relatively good wage, but I got really tired of living from one fortnight to the next without any money, sometimes running out two or three days before I get paid and being really stressed about that.

What I had to do was sit down, have a look at the money I had and be honest with myself. It’s groovy to go out and have fun, but you also have to ensure that you maintain your health. Maintaining your health isn’t just making sure you take your pills every day, it’s actually ensuring that you have the ability to be able to live satisfactorily.

I got a big piece of butcher’s paper and wrote how I felt and why do I need to save money and where was I spending my money. As a result I’ve made some changes. It doesn’t mean that I’ve given up my lifestyle, It was just a whole lot of different little changes, like taking my lunch to work instead of eating out, or buying one packet of cigarettes to last me the week and not taking my cigarettes to work.

I also talked to my credit union. I didn’t actually identify my status, I said that I worked on a casual basis and I needed to have some way of saving money that I knew I could get in an emergency. They explained all these different accounts to me and I started off I think by putting five dollars a fortnight into an account. Every couple of months I increase it by a few dollars.

I’ve benefited from making these changes because I’m not as stressed out around finances any more. They’re not in perfect order, but I’m getting there.