Recently the AFAO NAPWA Education Team (ANET) conducted interviews with a range of positive people about their experiences with HIV, for Having A Life: HIV positive people speak about their lives, loves and hopes for the future.
The booklet incorporates short extracts from the interviews grouped around issues such as positive identity, disclosure, sex, parenthood and grief and loss.
The stories below are longer extracts from the interviews, focusing on the experience of HIV diagnosis.
All the names of the people interviewed are pseudonyms.
Angus
When my doctor told me in 1996 that I had ten T4 cells, I was shattered. I almost burst into tears; it was such a scary result. What came to mind immediately were all kinds of fears about contracting opportunistic infections. The doctor immediately put me on Bactrim, and I had a consultation with an HIV specialist who prescribed antiretrovirals for me.
For a year prior to that, I was uncertain about using antiretrovirals. I was starting to talk to other guys who I knew were taking them, but at that time I was still somewhat anti medical intervention, and anti drugs. For a number of years I was strongly of the opinion that alternative therapies were better than medical therapies. Now I am of the opinion that combining those therapies is a better option than one or the other. The whole notion of one versus the other is such a waste of time.
Because of having ten T4 cells I felt that I had no choice but to go on antiretrovirals. I felt there were too few cells for complementary therapies to help. Sometimes a medical condition needs to be hit hard and fast and I felt this was one of those incidences.
Ian
I get up in the morning eternally grateful for my second chance. I’d say about 70 per cent of my friends died before we were all 40, so I didn’t expect to see it. I was only diagnosed in 2000, but I had the symptoms and was going down the same path as them for ten years prior. I was aware, but just in denial.
In 2000 I was working really hard as a tour director. I was taking this big group around and I collapsed in a mall. They got me home and into hospital. The decision to go on treatments was made for me really. People wanted me to take the drugs – I was getting major pressure from my family.
We went through hell trying to find a combination that worked for me. I had peripheral neuropathy so badly I could not put my feet on the floor. They took me off the ‘D’ drugs and it stopped straight away.
Sara
I was 23. I was travelling in Bangkok in Thailand. I was in hospital for what would have been my seroconversion illness, which was a kidney infection. I was told I was positive and then let go.
I had no idea where to go, how long I had to live, all that sort of stuff. It was really difficult. I chose to ignore it or deny that I was positive. I was in a perfect place to do it too. I mean, it’s a 24-hour city. I had 24-hour access to drinks and pharmaceutical goods. I didn’t access any health related services — that is until I got pregnant.
I was in a relationship, and because I was in denial I hadn’t told my husband. I got pregnant, went to a different hospital and was diagnosed again. That’s when, I guess, I had no room to move. I was pregnant, so, you know, you’re coming from a different point of view. You have to take care of yourself; I guess I had to look at the HIV.
I went to then see a doctor who was cold, clinical, I felt a bit like a laboratory rat. They only had the T-cell test there in those days, so I had the T-cell test done. Not a great deal was explained to me. I guess the information I had was pretty limited and I was too scared to access anything. I didn’t know what people’s reactions were going to be after what I’d already experienced. So, I didn’t get a great deal of support or emotional support or anything like that. I didn’t know that there were any support groups and I didn’t know who to ask about it.
It was also a very lonely time. My husband spent a lot of time at work and there were his older brothers there, and he’s got two older sons and his elderly father. So, I was a woman in amongst six men.
Not being able to talk to anyone meant it was really only my husband that I could talk to. Both of us were not in a very good place mentally. I guess I just plodded along. Lived one day at a time. I was really healthy. My diet was great. I exercised more than I ever have done. I was really very fit.
When I went into the hospital to have my baby unfortunately I had like a 48-hour gap between when he was born from the time the contractions started. Over that time period I got quite a run of different nurses and their different attitudes. I had this one nurse, she sat … first away from me, as far away as possible for the full shift. She never once looked at me and I was stuck to a heart monitor, which is really annoying.
I was really very sore in the back and they didn’t want to unhook the heart monitor. I needed to go to the toilet within her shift and I asked to go to the toilet. She got the bedpan and threw it on the bed. I don’t know if you can imagine a pregnant woman trying to squat, and urinate on a bed into a pan but it is a very difficult thing.
I felt she robbed me of my dignity. She’s sitting in a room. She won’t unhook me, it’s just one hook, get off the bed go to the toilet. She wouldn’t allow me to do that. So I either wet myself or go in the pan.
I squatted into the pan and I thought, well I’ve got nothing to wipe myself with. I asked, “Could you pass me a tissue” and she said, “unhook yourself and get down and get it yourself.” It was a very unpleasant experience
Not long after my son was born we all moved home to Australia.
Now my life is the best it’s been, everything is great. I feel very happy at work, and things are good at home. I’ve resolved a lot of issues. I think HIV sort of highlights a lot of issues in your life.
I’ve mostly sorted out a lot of personal issues. My husband is positive and we’ve been involved in an immigration battle for the last four and a half years but now that’s all been settled too. So, that’s a huge relief for both of us. He doesn’t have problems with Medicare cards. I used to have to fly him back overseas if anything went wrong and it was, a constant hassle all the time. So, that’s all cleared. He’s now a permanent resident. So, we’re all set basically and he’s also a lot better. He had a lot of trouble with medications, but he’s up and living his life now. Which is a huge relief for me too.
Ian
Somebody recently came up to me who had watched me progress from probably 1990 until now, and he said: “You’re an inspiration to me, because I’ve only just been diagnosed.”
I said: “Well you’re not going to die from this disease, but you’re going to have to live with it. Listen to your doctors. Keep yourself monitored and learn to live with it, because there’s some pretty hideous things linked to living with AIDS.”
You’ve got to chill and get on with your life. One way of keeping well is by keeping your mind on positive and taking the drugs. Structure your life around it so that you’re not trying to hide it from an employer, or you’re not making lies up. It is a huge part of your life now and you can’t stop taking pills yet because then the disease will come back up.
Copies of Having a Life can be obtained from AFAO or your State AIDS Council. If you’d like to share your own experiences of living with HIV or read more stories from Having a Life , visit www.afao.org.au.
