I was diagnosed in January 1997. I probably became positive in 1991, but went undiagnosed for six years.
I discovered my positive status through finding out about my daughter. Sarah had a lot of health problems after she was born, and at ten months she'd been diagnosed with cerebral palsy. Her upper respiratory tract infections just continued, and at one stage she had been hospitalised three times in five weeks. Then when she was fourteen months old she was diagnosed with HIV after an MRI scan.
Sarah's only risk was through me, so it really was a double whammy. I hadn't been offered HIV testing through any of my pregnancies. That was unfortunate because there are treatments you can take through pregnancy which can prevent HIV from being passed on to your child. I just didn't seem like the kind of person who would be at risk. I was just an ordinary single parent and I didn't think I'd put myself at risk at any time.
I'd had a relationship with someone who had previously injected drugs and he didn't know he was positive. I'm not angry about getting HIV. He passed it on to me unknowingly. If I was angry at him, I'd have to throw that anger back at myself because I passed it on to Sarah unknowingly myself.
It took me three days to build up the courage to tell my mum. I also had to get the other children tested, and I had to wait ten days to get the results back. Back then it was still seen as a death sentence. You wondered am I going to be here in five years.
Thankfully, the other three children were, and still are, all well and negative. My other children were still quite young at the time. My daughter was two and a half, and my sons were five and a half and seven. When all the testing was done, Sarah had a viral load of millions. I had to try and explain it to the children that we had the same illness, and that Sarah might be here for a small period of time and I would probably be here longer. I told them, because we shared the same bug, we healed more slowly if we got sick. The hardest thing was to tell my mum. She wasn't knowledgeable about HIV, so I had to become a bit of an educator.
It brought a lot of changes to our lives. We were living in Brisbane at the time. We moved back to New South Wales to get the family support we needed. That support is something I've always been grateful for, and my mum has been my best friend. Sarah had eyes that sparkled, even though she couldn't walk or talk because she had all those cerebral palsy symptoms. She died in September 1998, just two weeks after her third birthday. We were actually told in the May of that year that she'd have a week to live, so she did really well to hold on until September. I was able to do a lot of home care with her, which was good, but it was also hard. It was very important that she could be in a more comfortable environment with people who loved her dearly, and she only spent the last six days in hospital.
We had a lot of assistance from social workers, and grief counsellors etc. I've had a lot of support from my mother, my brother and sister. My family has made it easier for me. My mother also received a lot of support from the church she was attending.
Support for positive parents
I don't have a big support network because I've been my own support in a way. I'm a 45 minute train trip from the city. There aren't a lot of services I can attend in the western suburbs. If support groups are in the evenings or weekends or some distance away, it also means leaving the kids at home. When the support group is from 6 to 9pm do you leave your children at home or do you take them with you? Having a family makes these things more difficult, but that is being acknowledged more I think.
I often feel I don't need a lot of support because I feel I've got a lot of inner strength. But for those who are vulnerable, I think it can be hard. We've got the Haven in Blacktown of course, which is a fabulous service, but it's still just one place. How do people in rural and regional areas feel?
Volunteer work and indigenous heritage
I've been quite open about my status right from the word go, and I became involved in volunteer work. Five weeks after diagnosis, I appeared on a video, which was being made to help people who had been newly diagnosed. I've also been involved in public speaking. I've got the strength to advocate for myself and for others, and I'm pretty upfront. Usually within three or four weeks of knowing people, it comes up. I'm currently the Convenor of the Positive Aboriginal Torres Straight Islander Network (PATSIN).
When I was growing up we weren't in contact with my father's side of the family. I've always had an urge to find out more about our indigenous family heritage. It's always been something I've held pride in. I feel the indigenous community is one which could help themselves better, with the right people in leadership.
As the children got older and became able to comprehend it, I told them more about it. To mention HIV/AIDS when they were very young would have been too scary initially. They had heard about the Grim Reaper, and I didn't want to instil fear in them. I also did volunteer work in safe sex education and in raising awareness about HIV pretty quickly. I even ended up doing safe sex education at the school which my son was attending.
I've never wanted the children to experience repercussions from my illness. I've always been sensitive to that. The children have been wonderful, and I think if I didn't have my children I wouldn't have done half the things I've done.
Some services for women and families
Positive Heterosexuals
For positive heterosexual men and women, their partners and family members. Peer support, workshops, social activities and retreats. Free phone counselling. (Monday to Friday 10 – 5)
Ph: Freecall (NSW) 1800 812 404
www.pozhet.org.au
Sydney Children’s Hospital HIV Services
Pediatric HIV Service – emergency after hours
Ph: 9382 1111 / 9382 1851
High St Randwick 2031
PosWest women
gatherings, education, peer support, retreats
Western Suburbs Haven, Blacktown
ph: 9672 3600
Leichhardt Women’s Community Health Centre
GPs, nurse, massage, counselling.
Ph: 9360 3011
FPA Health
Full range of sexual health services, clinics in seven locations. HIV specific projects for men and women
General enquiries Ph: 8752 4300,
Clinic 9716 6099,
Healthline 1300 658 886
www.fpahealth.org.au
