I was diagnosed eleven and a half years ago, in December 95. I was 34.
It was totally unexpected and a real shock. I met somebody and thought we’d do the 90s thing and get tested before we had sex. As it turned out my boyfriend didn’t get tested and we ended breaking up soon afterwards. I went back for the result and was told I was HIV positive.
I thought I’d never have sex or children …
I had no exposure to HIV at all. I knew about the Grim Reaper Campaign, so my first reaction was: ‘I’m going to die pretty soon.’ I thought I would never have sex again and never have children. Getting the diagnosis was a shock and, with limited information and scare tactics on television, these were the conclusions I drew. None of those things came true.
After my first visit to Albion Street I felt a bit better. I was still in shock, but I think it was more to do with the lack of information and not being in touch with any people who had HIV. Eventually, I accessed services and got good support. I was also put in contact with another positive woman and found that really important. People don’t expect women to be positive unless they’re living in a third world country.
I’m the sort of person who likes to have as much information on board as I can so I can make informed decisions. At the time I was reading, speaking to people and getting on with my life. I continued to work and did everything as usual. That was the most important thing for me.
They say people come into your life for a reason. At this stage, I was already involved in self help groups and group therapy. Through one of these groups I met a man. Even though I had HIV; he still found me attractive and wanted to have a relationship with me. We were together for about five months and during this time we had safe sex. The fact he was in my life, at that time, was very lucky. He was a wonderful support.
Later, I moved overseas and met the man who would eventually become the father of my daughter. As things were getting more serious, I disclosed to him. We continued with our relationship and I got pregnant. He panicked and thought if I got pregnant that meant he could have been infected. He didn’t but he left for about six months and came back just before our daughter was born. We were together for about three years after that, but we never had sex again.
A reminder I do have HIV
I went on treatments during my pregnancy. I found it hard to start because it was admitting that I did have something wrong with me. My daughter was born negative. She’s eight now. Until recently, I didn’t even think about HIV. I have never been on treatment other than when pregnant, so I haven’t had that daily reminder. And I haven’t had any symptoms so I’ve been blissfully ignorant of it. Now because I have a few health issues related to HIV and low t-cells, I’m thinking about treatments. I haven’t quite got there, but I’m working on it with my doctor.
It’s very scary and it feels like it’s a point of no return. Once I start treatments, I’ll have to stay on them forever and that’s why I’m so reluctant. It was one thing with both of the pregnancies; I could stop taking them when my babies were born. If I take them now, for myself, it’s an admission that I do have HIV. My social worker said if I want some stability in my life, like going back to work and not getting sick, then maybe it’s time to think about it. When I was pregnant the second time, I do remember feeling really well. Treatments could give me a better quality of life, but it feels like a very big step.
Disclosure – where to draw the line?
When I was diagnosed my father had finished treatment for lung cancer and was quite sick. I didn’t want to burden him or my sister with my diagnosis. I was concerned especially for her. There’s no way I could tell my sister because we had just lost our father. I couldn’t burden her with that because she would assume that I would die too. It was less to do with shame for myself, but more to do with the effect it would have on my family.
I’ve disclosed to three friends and probably four or five lovers or potential lovers and that’s it. When I was diagnosed I rang a gay friend, because I thought he would understand. He was really shocked and couldn’t believe that it was me and not him. One other person I told was a girlfriend and I thought she would take it really well and be supportive, but it turned out the other way. After that I didn’t disclose unless it was absolutely necessary.
Disclosing to potential partners changed a lot over the years. After my diagnosis, the first time I had sex I found it relatively easy with my then partner because of his circumstances. He had an understanding of HIV. There was one person after him I disclosed to before we were sexual. After this relationship I had a long gap of no-one. I eventually met someone and we did everything apart from sexual intercourse before I disclosed. For some reason I became more lenient about where to draw the line. I can’t really explain why it changed. It’s not very sensible disclosing in bed when you’re about to have sex.
It’s very difficult to find a way to disclose. And because I have a history of issues with relationships, I think that maybe it’s my fear of rejection as well, which did happen on one occasion. It has got more and more difficult actually. I’m in a new relationship and I have disclosed to him, but I didn’t do it until after sex, and that’s something I feel bad about. I will always have this small fear that he will feel angry and decide that I did the wrong thing.
I guess in keeping with my lack of disclosure, I haven’t planned to tell my eight year old daughter. I still feel that way unless I get sick or I go on treatment. On the other hand is that fair? Is it better to disclose now when I’m fairly healthy? Then if I did get sick it wouldn’t be such a shock to her. On the other hand, why do it when it’s not necessary? At eight it would be difficult for her to keep my diagnosis confidential and I wouldn’t want it to go around her school. With my son I don’t have to think about that for quite some time yet.
If I get to the point of wanting to go down that road I would probably try and get in contact with other parents who have disclosed to their children to see how they did it. I would actually research the whole topic and plan it before I did it.
Right now…
For the last eleven years I’ve been able to forget about the fact that I’m HIV positive because it hasn’t affected me in any way. Now it’s actually affecting me and I need to do something about it. With that comes the realisation that if I get sick, what’s going to happen? What will happen to my children? I have good medical support. I also have a social worker and saw a counsellor for a while. My social worker is very interactive. I get phone calls to see how I’m going; this person can find things out for me if I need some help and gives me advice. It’s really, really valuable.
Emotional support is important as well and that would come from Poz Het or a positive women’s group, and also my social worker/counsellor. I don’t really have the time to go to things, but knowing there are people I can call is important. I do benefit from actually going regularly to something, but it’s tricky with distance and kids. And because I haven’t disclosed, every time I do something related to HIV, I have to make up things like “I’m going to a workshop on relationships”. I have to lie. It can be tricky making things up all the time. Sometimes it gets a bit much and I don’t bother.
I’ve been positive for at least 12 years, maybe longer and lead a normal life I’m a mother of two negative children who are just gorgeous. I’ve been single for a long time and to have somebody who cares about me and accepts me for who I am, is wonderful. You need to be resourceful, don’t sit there and wait. Get out there and find out what you need.
PS Since I did this interview (February 2007), I have two things to tell you, which are relevant to both my personal story and living longer. I started on treatment, about three months ago, and feel absolutely fantastic. It was almost instant - certainly after a couple of weeks I felt like a new person! Secondly, I am pregnant again at 46! Our baby is due in January and again I will be going through Maternal Foetal Medicine* and Clinic 16, both at Royal North Shore Hospital. They looked after me so well last time and I feel very comfortable being under their combined care again.
Maternal Foetal Medicine* This service provides assessment and diagnosis of pregnancy complications and ongoing pregnancy management.