Jane, age 53 / South Coast, England


I decided to change the world. I went on that trajectory. For about a year or two I was very committed to making a difference.

I was diagnosed in 1990. There was only about 250 diagnosed women in England at that time. I went back to Zimbabwe, where I’d been visiting. I wanted to be a artist, so I did the illustrations for this poster campaign, the first AIDS awareness campaign in Zimbabwe. And then I did a lot of personal testimony work.

And then I just got completely cynical about what was becoming the AIDS industry. And I decided, I’m gonna have my own life, even if it’s only five to eight years, I’m just gonna do what I wanna do. So I became a graphic designer and a teacher.

I’m glad I’ve got things that are really important in my life, other than trying to make a difference. I don’t have that drive anymore. I suppose I want to find some kind of… peace and stability in my life. I’m self employed but work for some large NGOs and some women activist groups and networks. It’s brought me back, I suppose, back into the fold after 20-odd years. I’m quite glad I can look at it all from the outside, ‘cause it is a bit of a circus, it has to be said.

I’ve got an allotment, which is like a little field – you know, they give you little fields in England. I LOVE growing things, and walking. I love journeying, just in my own country, it doesn’t have to be anywhere exotic, so I walk a lot, and I keep diaries. I write, and I draw, and I paint. I make things. I live a creative life, that’s what’s sustained me, really.

I have to say treatment’s made life easier. I’ve had a honeymoon period of ten years where I’ve been in good health, and I’ve almost become complacent. But now I’m facing old age with a body that’s potentially not going to behave itself.

I seem to spend an awful lot of my life going back and forth to various consultants and the GP [general practitioner] and the pharmacy and, I mean, it’s almost like a full time occupation.  And I keep thinking it’s all just a little hump, you know, and I’ll just get over it, but it’s beginning to dawn on me that that is the prognosis of living for a long time with HIV, that it DOES come with other health complications.

I think I saw it through rose-tinted glasses, treatment, in a way. I thought, “Fantastic! I’ve been given another life.” And I was, and I’ve enjoyed that feeling. But I’m now realizing it’s not going to be easy. And I also have to accept, like a lot of people, I may not get old and be well.

I don’t have a family, I don’t have a partner. I don’t own property, I never bought anywhere to live, because I didn’t think I’d live long enough. I’ve had to learn to live a life again. So it’s quite difficult, actually. It comes with a new set of problems.

I look really well, you know, I’m energetic. I don’t fit the profile of somebody who’s got health problems. I think I put myself in a position of denial, really. But I was very determined to live.

I DO cope with it on my own. There’s no one I talk to about it. And I think perhaps that is also the burden of being older with HIV, you don’t want to show the vulnerable side of yourself, because you’re a role model for younger people or people who are newly diagnosed. There’s a lot of emphasis on showing the well, positive, “Look, I’m okay, it’s gonna be alright.” It’s hard to be vulnerable in those circumstances.

I think I self stigmatize, because I AM quite fearful. At the moment I live in a nice flat, the landlord lives above, but they are super conservative.  It’s a conservative city. They’re really sweet people, but I think if they knew… I don’t know, you see, they’d probably be fine. But I’m very fearful of it. When I throw my rubbish in the recycling, I never throw my medication things in there. So I’m trying to buy my own place. I’ve saved enough money to try and put a deposit down. I don’t want to have to live with that nonsense.

My parents, in a way… They now see that I’m successful in what I do, and that counts a lot for them. But they don’t know that I’m HIV-positive. I’ve never told them. They’re very elderly. I’ll be relieved, in a way, when they die. It’s, yeah, it’s a bit difficult.

I’m out with my sister. Yeah. My sister’s fine. I mean, when she got breast cancer, she understood. She said, “Now I know what you’ve gone through.” And I suppose that’s the other thing about getting older with HIV: the things that have been hard to bear are suddenly the same things that other people are having to face. Except that I can’t come out. My sister does fundraising for breast cancer, and I sometimes think, “You know, no one’s gonna go run five miles for me!”

People say to me, “Oh, you seem really self-sufficient and independent.” And I think maybe that having HIV has kind of made me very self-contained. Not self-content. I’d love to have a relationship. I look at other people, I suppose, who’ve got the package, the partner, the kids, the house, the careers, the support.

There’s something lonely about us. It’s hard to articulate. You can sometimes feel it with people, that they are very much reliant on themselves. They’ve had to be. And I think I have that. Like a lot of women I do have self-esteem issues, I mean, they’re compounded sometimes by the HIV, but then in some sense it’s also made me stronger, I think.

I did hit a time when I was very unwell, and I didn’t have anyone then to support me, but I did get through it and I have that trust in myself that I can face anything that comes my way. I’ve done it once and I know I can do it again. In a way that’s a blessing.

I think possibly my biggest identity is as being an HIV-positive woman. It HAS defined me. And in a way it separates me from other people. But I’m kind of proud of it, actually. It almost makes me want to cry, but there is a real sense of achievement, and, yeah, I do feel proud of who I am and where I am now. And I want to take that into the next 10 years, 20 years. In the same way that I have so far, in a quiet way of being who I am in the world. I’m not gonna shout about it. I don’t think I need to.