Leigh talks about being diagnosed in prison in 1987, how she survived two bouts of breast cancer and why she is involved in our HIV and ageing project.
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I first originally did some volunteering a couple of years after I was diagnosed because I didn’t know what to do with my life or I really didn’t think I had a life at the time.
It was long time ago. It was 27 year ago I was diagnosed.
So I helped in the early days of the international community of women living with HIV and AIDS.So I volunteered in that capacity for 7 years. I was a trustee but also hands on volunteer because in those first early days we had no staff, no paid staff.
That gave me an awful lot as well as others because it was in the days it was so needed. There wasn’t much support for women nationally or globally.
So it was a real empowerment thing for myself, the people involved I suppose.
I got to travel a lot and meet some incredible women and do some incredible stuff. And I got back involved recently because I got approached by someone at Terrence Higgins Trust who knew me from years and with HIV and Aging Project.
Which I felt well, it would probably good to be back involved again because I’ve been a bit of a loss as to what to do with my life recently.
The last ten years have been quite challenging for me because I’ve been through 2 bouts of breast cancer. The most aggressive kinds of breast cancer.
That initially first bout they said that chemotherapy would be fatal for me because of my HIV status. When it returned two years later they said it was imperative.
But when I did have the chemotherapy two years later, one of the steroid drugs they gave me for the nausea for the chemotherapy interacted with my AIDS drugs which caused mania.
So I think we are the first generation and it’s a bit like things are only just coming to light, and obviously so because these drugs are new and they are powerful drugs.
In ‘87, it was January, it was the week of my birthday, and I was in Holloway prison, and I was given my diagnosis.
My boyfriend already had his so he spent a Christmas knowing. And there were those big ads. All we knew about it was HIV=AIDS=DEATH and there was mass hysteria.
I was immediately put into isolation. My food was put through a hatch. I could hear everyone talk about the girl with AIDS.
But I had one, - and I was quite accepting that I’ll die. But I just thought I’m not going to die a victim, I’m not going to die a drug user and I don’t want to die in prison.
Originally I was very open about my status because I was so angry. I was so angry that it wasn’t treated like any other illness.
And also there were very few other women who felt able to speak out.
In the past I also physiologically think I told people because I wanted to be rejected first rather than later. I mean even when I was diagnosed we had bricks through our window. We had people shunning us even within the drug using community, it was ridiculous.
Today its still the same as when I was first diagnosed, that the best support you can get is peer support. Which is why I got involved with AIDS work in the first place because there wasn’t a support network for women.
And for instance I had people who came to me that because I was positive and because I was sitting there happy and looking well, even before, long before the drugs came in, it gave them hope.
Last year from an HIV organisation there was an email, a friend sent it to me saying did I want to join this choir. It was made up of positive people and then he rang he said come on, he said come. I said look there’s two reasons: I can’t sing and really don’t feel like facing anyone.
And he said: 'it would be good for your soul'. And those three words ‘good for your soul’ made me go. And it was the most amazing experience.
And what was great about it actually was we were just thrown into this thing and there was no talk about us being HIV. It was just all about singing and that was fabulous. And so I ended up singing a solo for someone who couldn’t sing.
Anyway I’ve had enough of illnesses. I think I can hopefully have a few years and I can manage to turn my turn things round and live those few years as best as I can.
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Pastor Elizabeth was told to swap HIV treatment for prayer. See her story.
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