Life with HIV

A positive HIV diagnosis has a profound impact on many aspects of women’s lives, including their parenting:

“And then on the Friday, um, we went up to Royal Perth Hospital, and the men in the white coats delivered um, firstly they, they delivered my daughters’, diagnosis, and they told me that she was negative. And then they told me that I was positive. And the very first thing that I said, and I remember it very clearly, was that she’ll be all alone. And so this image of a child sitting on a bed, by themselves, really spoke to me about that stuff. Um, and that’s what all of my, all of my thoughts and, and feelings, and pretty much everything that motivated me was that she would be on her own if I died soon. So, my parenting style changed about making her highly independent. Um, I kind of vetted all my friends as to who would be suitable to look after her and all that sort of stuff. Cos it was, as you say Kath, it was all about death and dying, we were all going to die.”

Women living with HIV experience different degrees of isolation, for some this results from ill health or fear of stigma and for others they felt very alone when they were first diagnosed:

“My diagnosis was pretty scary because there was nobody, there was nobody. I love to share everything with you. I have such a lifetime to share with you. I've been positive for more than 30 years. And I had nobody to talk to. And to see all your smiling faces. And to see people talking, sharing, communicating, I love you all. Like I said, you keep me going and I love you all.”

Stereotypical and stigmatizing understandings of women with HIV often mean they suffer years of ill health before they are diagnosed with HIV:

“I didn't find out for 8 years until I went into the hospital and presented. I’d sent my kids with their Dad and I said, “I'm here, I don’t what’s wrong with me?” The doctor checked me and said, “You know, I used to work overseas and I think you've got AIDS.” Then I said, “Wake up and come back when you're a doctor.” He went for a while and came back but he said, “I can't test you here. I've been to see my boss and he says I can't test you. So you need to go to your own local GP and have an HIV test.” My GP was away and his fill-in said, “There's nothing here to indicate this,” whilst flicking through my file. I wasn’t a drug user or anything. But I finally got the positive diagnosis, and I remember praying to God, saying “I’ve got three kids to raise, mate, let me raise them, and then I’ll lay down happily and die happily.” That was 22 years ago, so yeah, I’m still soldiering on. I don’t get very sick very often. I live a happy healthy life. Though when thinking back, I’ve got the coffin picture as it always seemed to come back to that funeral thing, you know.”

Fear of, or in response to stigma and marginalization results in practices such as hiding a diagnosis and choosing to lead a double life which can be very stressful:

“Yeah, so you’ve got to sort of be a bit selective about who you tell what, when, and that sometimes feels like you’re lying to everybody, but it’s to protect yourself and to protect everybody else. And until the stigma’s gone, I’ve got a huge family of HIV people, and I’ve heard some horrific stories about things that have happened to people when they’ve disclosed, trying to help the community. So, while that still goes on, you gotta keep it quiet, or you cop the repercussions but I can’t do that to my family, you know. So, yeah, I’ve moved away from all my family because of it as well. I live out here on my own. I have done for years now. Um, I see doctors and I do that secretly.

Because of or despite the trauma of a diagnosis women often feel that they are unable to process it because of their responsibilities such as parental or work responsibilities:

“When I was diagnosed with HIV Wow, there were a lot of things going on. So for one, I had had a very sick baby for a very long time. I had been tested through my pregnancy and come back negative. Because bubbie was so sick, they tested again and it came back negative. And then when he was nearly one I was tested again because I had a sexual assault and it came back positive for me. So instantly we knew. That's why my baby had been so sick. So yeah, in that time, it was all about getting baby treatment, getting him in hospital, getting him on medication and seeing him get better so quickly, within a week. Cause he had very physical symptoms of his skin peeling and constantly having, you know, severe nappy rash to the point of bleeding. Yeah, so it was very bad but seeming him get better instantly. All his hair had fallen out from the skin peel and then his hair started growing back. So in that time, I guess my treatment and counseling and all those things that I would have normally had were really put off to focus on bubbie straight away.”

While HIV medication is greatly improved there are still challenges related to life-long medication, and issues with side effects:

“I remember getting my first medication. I was put on Genvoya and that was big for me because I was only young. I had never been on medications before. So I was like OK now I have to take medication every single day. And yeah going on something that I know I have to take every single day was actually quite a big change in my life for me. This week, I’ve you know, especially over the weekend, I got a bit unwell again so I started to feel quite down like, “oh, when is this going to end” and um, I guess not really having a clear answer as to why I keep feeling sick, it was just a bit frustrating.”

A number of the artists in the Positively Women Workshop had been advised when given a positive diagnosis not to have children or to terminate a current pregnancy. However, some of them decided to ignore that advice:

“I got called to go back [to the hospital] and he said, “Look, I’m really sorry but you’re HIV positive and you're pregnant. You already got a 4 year old. You’re gonna get sick. Your partner is gonna get sick. You’re both gonna die. Whose gonna look after you child? The baby will have things wrong with it. And then 3 months later I knew I was pregnant again and I went back to the clinic, but I just said to them, “I'm having this baby and nothing's going to change my mind.” Now I'm so glad because that's my daughter who's 32 now and has given me two grandchildren. So I didn't expect to see my kids grow up and now I'm seeing my grandkids grow up so it's amazing. And I had 3 grandchildren. My daughter has three and my son has one and they are the highlight of my life.”

The time of diagnosis is traumatic with multiple intersecting factors including choices around wanting to have children. Some women were counselled to have abortions and hysterectomies which many did:

“So I also discovered I was pregnant at the same time that I got HIV. So the advice was to have an abortion I didn't know what to think. All I knew was I was pregnant. Just that decision, when the doctor said, “You're pregnant as well and we recommend termination, your baby is going to have HIV and could be deformed.” So they convinced me in a way.”

Sadly stigma and marginalization are a common feature of living with HIV, this was the case in the 1980s and it continues to negatively impact women with HIV:

“So I used to get hurt a bit when the kids were little, and they found it difficult to tell their friends, or they would tell their friends, and then it would bounce back, or come up on Facebook and stuff. I was more hurt back then, which you knew me back then...I moved up to Queensland with a partner who decided to throw me out once I got the place all setup. I did lots of work and renovations and stuff and then he decided that I was positive and he didn't want anyone in the small town to know so he just booted me out about 4 months ago.”

Betty talks about the significant negative impacts and trauma of a diagnosis in her life:

“I just remember spending a lot of time in hospital waiting rooms and being more doors and being shuffled around to meet me. I didn’t do any counselling. That’s always what I’ve done. This is my whole thing, why I've been depressed lately. My whole thing in my life I just take it I suppose and go ok “everything's ok” you know and “I can deal with this.” That's what I did when I found out. Yeah “I can deal with this. It’ll be all fine.” Yeah, so now, that's why my brain is a little bit broken I suppose because everything is kind of just, you know, me dealing with everything and being positive and accepting it is coming to a head. Does that make sense?”

Creating and working with images of strength and pleasure highlighted the multiple aspects of artists’ lives, and how they are much more than their diagnosis:

“So, you know, you’re ill and then you do your healing, like through the sand picture, and then you go “Well actually, life’s great, you know.” And you can sit there and do nothing, and go “Poor me, I’m sick or whatever”, or you can actually get out and do things and enjoy life and even if it’s in a small way, because I haven’t always been able to do things in a big way. Do all those things that give me pleasure, you know. Like sewing and everything like that. And it’s amazing what things can turn into. Like I’ve had this time with not much to do. I’ve been doing more sewing in my life. I’ve started to learn things like Morse code. Can you believe it? It’s awesome. I’d never have thought of that. And, it’s like, if you’re staring at the ceiling because you’re ill, then you don't go out and explore things and do things.” Agatha spent a lot of time looking at hospital ceilings when she was first diagnosed and, in this work, she flips the ceiling to make a dance floor and draws a dancing shoe on it.