Interview 22

Age at interview: 43

Age at diagnosis: 42

Brief Outline: Her anti-HIV drugs (Kaletra and Combivir) brought her viral load down to undetectable at the time of interview. She has strong faith that Jesus has healed her in combination with her medical care.

Background: A 43 year old woman from Africa who describes herself as 'coloured.' She was diagnosed when she went to hospital very ill with TB.

More about me...

Age at interview' 43

Age at diagnosis' 42

Sex' Female

Background' A 43 year old woman from Africa who describes herself as 'coloured.' She has 3 children and was diagnosed a year ago.

Outline' A 43 year old woman from Africa who describes herself as 'coloured.' She has 3 children. She moved to the UK over 2 years ago to escape political persecution. She was diagnosed as HIV positive when she presented late to hospital very ill with TB, and with a very low T cell count of about 20.

Her combination therapy (Kaletra and Combivir) brought her viral load down to undetectable and her CD4 cells to 220 at the time of interview. Her medication has not caused her noticeable side-effects. She also takes vitamins, has improved her diet and exercises. She has strong faith that Jesus has healed her in combination with her medical care. She wants others to know that Western medicine works and that Jesus also heals. She is very open about her diagnosis and believes that coloured and black African women should consider themselves as equal to men.

Is reluctant to view her experiences as side effects.

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Maybe I have side effects and… Maybe the frame of mind I have, I don't look at the side effects I have. Because maybe people will say, 'Oh, you get depressed.' But then everybody gets depressed.

I get tired. Everybody gets tired. I get into a bad mood. Everybody gets into a bad mood. Every now and again, I can't sleep. Sometimes. But everybody does. So I don't look at that as side effects. So as far as I'm concerned, I don't have side effects.

Because for me a side effect would have to be something that only I'm getting, because of the medication, and other people don't get.

So I don't have side effects.

A woman who was close to death talks about a spiritual experience in hospital where she talked to...

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What I can remember is that I spoke about my life. My childhood. How difficult it was. As in always having to be the eldest. Always having to be the person who sets the example. Always having to be the strongest, the shoulder. The mother, the father. I spoke about that part of my life. I spoke about my disappointments in life. My marriage. I spoke about more disappointments in life. As in why can't I be' Why can't I remarry? Other people get married 3, 4 times. I did it once. I wasn't in the wrong. My husband left me for someone else. But why can't I be happy? Why can't I find that happiness? I cook. I clean. I think I'm a good person. I think I've got a good heart. I, I like helping people. But what's my problem? That I can't find somebody that I want to marry. Oh people they want to marry me. They did. But I can't find anybody that I want to marry. It's not not being able' It's not people not wanting to commit to me. It's me not wanting to commit to them. What is my problem? So I went through that part. I then went through the part of saying, 'I'm sick. I don't mind going now. But there's so much I need to do. And I'' My, my daughter that's back in [Africa] had just had a baby in the August before. Who I've never seen. I haven't laid eyes on. You know, in the physical. I've seen photos, yes. I've spoken to my granddaughter. Until today I've never held her. And I felt I needed to accomplish all that. I needed to still sort that daughter's life out, my granddaughter's life out. I still needed to wait for other grandchildren. So that was my reasons of saying, 'I can't go now. There's too many loose ends I need to sort out.' You know. And Jesus said to me, is, 'You are healed. You are healed. But you take your medication. It is through your medication that you are healed. It is through me that you have the right doctors, have the right medication, that you are healed.'

Talks about how she draws strength from her HIV clinic.

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In actual fact, everybody in that team, [name of HIV consultant], the guy who does my bloods, the clinical nurse, they are fantastic. They take their time to talk to you. And 9 times out of 10, if you don't want to talk about your HIV status, you don't have to. You can just talk.

So the whole team, [name of HIV consultant], [name of HIV consultant], [name of nurse], to me they've, they've been a strength to me. Because they've shown me that life goes on. And you will get knocked every now and again. Like a child who's learning to walk, you will fall down. But you get up, dust yourself, and move on. So in that way I have found that they've been a strength to me. And they've been very open with me. And I think the relationship we have now is not a patient-doctor' a clinical relationship. It is a relationship for what the word relationship means. It is a relationship that we have. And they have that even with my children.

She is very open about her HIV status.

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Because' My children don't like it. For the simple reason is they feel that I should only tell people who need to know. I feel that I would rather tell you, let you make your decision, whether you want to talk to me, whether you want to be my friend, than for me to become friendly with you. And to have a relationship with you and then later on you're pulling back. And it's because you heard via the grapevine what my status is. So I come out straight, tell people, you know. And give them the option. If you want to still come to my house and have a cup of tea with me, then you may. But if you don't want, I would rather know from the onset where we stand.

She did not fear death, but did not want to leave her children.

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I could smell death. I can't describe the smell of it. But it's a smell that you will never understand. Other' You'll ask other people, 'Can you smell that?' And some people will say, 'No, I can't. I can't smell anything.' But I could smell death. And I kept asking my kids and my visitors, 'Am I smelling?' You know, 'Am I smelling?' And they'd say to me, 'No, you're not.' But I could smell it. And I could feel it very close. And I was' I wasn't scared to die. I was scared to leave my children. You know, there's a difference between the two. I wasn't scared of death. I was scared to leave my children. Because I still feel they're too young to get on in life. There are still things I need to teach them about life. You know, the principles. Not teach them about life, anything big, but the principles of life. That your word is your honour, things like that.

Appeals to people of 'mixed heritage' to overcome stigma and ignorance for their own surivival.

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I appeal to people, especially people of mixed heritage. Yes, you, of mixed heritage. You've got chips on shoulders that I understand, because of the different cultures and the conflicts. But come to terms with what is out there. Accept HIV and AIDS for what it is. Accept it. You can't get it from drinking from people's cups, using toilets. It's the' It's sexual. Come to terms with it. Curb the, the' this nonsense that if you promiscuous you, you're smart, you're brave, you're strong, you're with it. No, you're not. You're just a fool. Come out. Get tested. The sooner you get tested, the sooner you can come to terms with it, the sooner you can get the medication. And the sooner you can live. And that's what we're here for. Is to live life to its fullest.

Describes how people with HIV can shift their thinking to do what they want to do and avoid...

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It's not a disability. It's not a disability. I've got 2 legs. They move. How am I' How do I have a disability compared to the person that's in a wheelchair? They can't walk. I've got everything. I've got my faculties. Everything works. May not be working in the order I want it to work in, but the point is it works. So get out there and do something. I mean that's, that's the only way. You've got to, you've got to get yourself into that right frame of mind. You've got to think of your future. You've got to think of the things that you've always wanted to do. Especially for the people that are recently diagnosed. They should think of the things that they've always wanted to do and haven't been able to do it. And decide, right, they're going to do it. Put a fra- time frame on it. And get out there and do it.

And not to just look at yourself as, [squeaky voice] I'm sick, I'm going to die. We're all going to die. Yes, I've got HIV, I'm HIV positive. You might be negative. But you cross the road, you die. 10 years down the line' lane' down the line, every time I walk past that sight, I realise, oh, that's where Damien died. But I was supposed to die before you. No, I wasn't. We all got our time.