Interview 18

Age at interview: 33

Age at diagnosis: 27

Brief Outline:

Her current combination of abacavir, AZT and 3TC has few side-effects. She feels much better having started exercising and improving her diet. (Video and audio clips read by an actor.)

Background:

A 33 year old black African female with a young 5 year old child. She was diagnosed as HIV positive as part of pregnancy screening.

More about me...

Age at interview' 33

Age at diagnosis' 27

Sex' Female

Background'  A 33 year old black African mother of a young child. She was diagnosed as HIV positive as part of pregnancy screening.

Outline'  A 33 year old black African mother of a young child. She moved to the UK 9 years ago and was diagnosed as HIV positive as part of pregnancy screening. While her initial combination therapy caused difficult side-effects (e.g. tiredness, rashes, ingrown toenails), her current combination of abacavir, AZT and 3TC is much more acceptable to her. She has also started exercising and improving her diet, and she feels much better for it. She has had good reactions from the people she has selected to tell about her HIV, although one ex-boyfriend initially reacted badly. She plans to tell her child when old enough so the child can better deal with the news. Having to care for her child, and gaining support from women at 'Positively Women' and 'Body & Soul' has been important to her well being. Although her immigration status is uncertain, spirituality and positive thinking are important in her coping well.

(Video and audio clips read by an actor.)

She was distressed about the side effects of her medication, but the doctor focused on the...

In-grown toenails… The nails, instead of growing outwards, they can grow back in and it's very, very painful. And it won't stop doing that unless you stop taking the medication. So I had to go for surgery for my toes, that's a really… they had to pull it out and cut off a big chunk of it, it was quite… it was very problematic. So I had to complain to the doctor. I would say my doctor was slightly difficult, I know she was just aiming at a very good CD4 count but I was really suffering... every time I went, I complained about the headaches, the rash, my skin really got bad. She explained again that it's… again because my immune system's going up, so that's why I was getting the rash. I was tired, breathless as well. I used to get breathless, yeah. But when I really had the ingrown toenail I really couldn't take it anymore, I said no that will have to change…

Found that exercise helped her with fat on her tummy. (Read by an actor.)

I've changed… tried to change my lifestyle a bit because when I started taking medication, I used to be a size 12. I went up to a size 18 within three months, yeah, it was really, really quick. So… Oh it was very difficult because then my body changed and that is, that was the most difficult thing and still is a bit difficult now because I've suffered, yeah. I do get a bit of lipodystrophy, yeah. 

And when I did put on that weight, again within three months, it was just the weight and then a year after, two years after I started noticing the difference… I mean my legs are very thin down towards my ankle. And I never used to have thin legs. I'm always struggling with fat around my tummy. 

Now because I've started going to the gym for the past three years now, or two and a half years now, I've been going to the gym regularly, and trying to do sit ups and everything. So it's really changed now, I've really changed now… Yeah, it's really helped. I lost the weight, went down to a 12.

A midwife and counsellor helped her when she got her HIV results. (Read by an actor.)

They have a specialist, they have a specialist midwife which is quite good. And she sort of called me into a room and just said to me when I sat down that the test I had done came and it was positive. I was really shocked, I just… I was shocked, I was frightened, I was scared you know. Yeah, it was really difficult. 

Yeah, she was quite good cos she tried to… the first thing she said is, 'What do you understand by that?' And then I carried on to explain that I know that is causes AIDS and there's no cure for it. That's what…. the most I know. I mean, I have an idea that there's some kind of treatment, but I'm not sure about it. But that's all I knew. 

So she carried on to explain how… What… everything to that stage, you know what treatment they've got, and what… how HIV affects the body and everything. She explained everything. And how, the first thing she really talked about was how she can prevent, if I'm put on for treatment, then I can prevent my unborn son from being infected, yeah. 

And then after she… talked to me for a short while and then she called the couns… they have psychologists, the counsellor, yeah, and she came. She didn't seem to talk much. She sort of just comforted me and told me at least now that I know, I'm not going to just fall ill and be taken into hospital sick or something… 

And then they talked about the fact that I shouldn't rush and tell people. I should think about it. I shouldn't feel I need to tell people. 

And I remember, yeah, the counsellor gave me a number and said if there's anything I want to talk to her about I can ring and if I want to book an appointment to see her. And the midwife as well. 

Had much more energy and better concentration after improving her diet and exercising. (Read by...

I felt much stronger, like I said. I couldn't… before then if I go out I would be so tired I would just have to come back home or have to you know… but now I can go out all day and just you know… I'll go into shops and I walk around, walk around for hours and I will, and I don't feel tired. I've got more energy, yeah. 

And I've got more energy to take my son out to the park and run around with him and I just don't feel as tired as I used to. I really used to feel tired. 

And it even just to go to the support groups then used to be such a big job cos I used to feel just so drained, so tired and all I wanted to do was sit down. I couldn't stand up for a long time, yeah. I did feel quite… And then the dizziness and the headaches as well. 

I think going to the gym has helped with the headaches and it helps to clear my head as well, clear my mind. And then also my concentration is quite poor cos of the medication, that was before I started taking… going to the gym. But since I've been going to the gym, I still get that… and I notice that happens more when I'm tired, but when I've gone to the gym regularly for that week or whatever it helps me, I can think straight.

Attending a support group helped her to see that a painful condition was actually a relatively...

And it really got bad when I said I had an in-grown toenail, which I did have. And for a long time I didn't know it was an ingrowing toenail, and that's one of the reasons why attending groups were really useful to me. Because we used to have doctors come in to talk about side-effects and people would come and say I've got this, I've got that, and we'll compare side-effects. 

It was only when I came with the bad toe and I was limping a bit and I couldn't wear covered shoes that people said, 'Are you taking Indinavir?' And I said, 'Yeah.' That's what it is, that's what's causing it. In growing toenails, it does, yeah. The nails, instead of growing outwards, they can grow back in and it's very, very painful. And it won't stop doing that unless you stop taking the medication.

Wants to do work that is enjoyable and benefits people. (Read by an actor.)

And then it's stressful as well cos people… I find… I think there are lots of people in jobs that don't really like what they're doing because of the pay, because of the money. So again, that's another thing I've changed, if I'm going to be going into a full employment now it will… must be something that I enjoy doing and also where I sort of improve people's lives in some way or change… So I'll probably, I can easily find myself working in a charity, yeah, where there are benefits to people, yeah.

While shocked about her HIV status, her sister was a health professional with experience in HIV,...

The very first person I told was my sister and I had to tell her because she was working in my hospital then. And she… the midwives that were going to be working with me are people she knew, and they knew me as her sister and all that. So there was no way I could keep it away from her. 

So I had to tell her, she was OK with it because she apparently had been working with a lot of women. She had been working with… she knew of a lot of women with HIV coming in, but she was very shocked. She was saying oh because we have a lot of people from Uganda and Zambia, from East Africa, again you know, which is true, it's a higher number from that side you know. And she said not really… she's never come across someone from our country and all that. So she was shocked about my diagnosis. 

But she was quite good, she was… And I've never had any problems with going to her home and not… people have had experiences of going to people's homes, and using their cups, and then the cup disappears, yeah. And people have been told not to come out of chairs, when they sit in a chair, they say stay there you know, that kind of thing. But my sister she wasn't, she's not like that, she wasn't like that, and she still isn't like that now. So that was helpful because she wasn't ignorant about it, yeah.

Has decided to gradually introduce the topic of her HIV status to her child. (Read by an actor.)

Telling my child about my HIV, it worries me, but the way I've chosen to deal with it, the way I intend to deal with it, is to start to explain to him as early as possible so it's not so much of a shock. I know a few women are really scared of telling their children and they don't want to tell their children at all. 

But children can hear things and they can pick things up very easily, and other… from other members of the family they might start talking and a child just hears what they say. And they start to suspect that something isn't right and they might start acting up in their behaviour, yeah. So I've decided that as early as possible, I'll start to hint the fact that I've got a medical problem. I won't tell him exactly what it is. 

Again, that's because he might go to the playground and just say it out you know, and then he'll be discriminated against and I don't want that, yeah… Some [women with HIV] have told their children quite easily, they've just told their children when they were diagnosed and again, some have not. 

Yeah, and the ones that have not are really, really scared you know. And it's only because they care for their children, they don't want them to be hurt or whatever so they think it's better. 

She says that men who want unprotected vaginal sex have various ways of getting what they want. ...

But from my friends are going with black men, it's an issue, it's a big problem for them. There's a few of them that will insist, and then you get the ones that it's difficult for them. They insist but the man will just maybe take it off or something you know. 

Yeah, it's a problem and I think with black men, African men, they need to understand that… they still don't believe… again they think it won't happen to them or something. And they look at women and think oh she's healthy you know. A few African women I know that have been in clubs or wherever and they've told men when they've met them you know… I'm positive, they say no, no you're lying because you don't want me… that's why you're saying that, yeah. They just won't believe, yeah. 

I don't know if it's ignorance or they're just, more of denial I think, yeah. They'd rather take the risk… 

What would happen I would say with a white man is they would stop the relationship because they want… I can remember speaking to someone on the phone and he was just saying in terms of sex, he likes having unprotected sex and I said, “Oh no, that's not going to happen, that's totally impossible.” And… there was him, and he said, he was meant to contact me again and he didn't. Which I felt must be because of that.

And then there was the sort of person that said oh no, no, no… We actually went into an argument and he said no, he doesn't get much pleasure with condoms and he doesn't want condoms. And I went on to explain to him that then you're putting yourself at risk, and you will pick up something eventually you know, if you've not already picked it up you know. Yeah, so they won't sort of stay in a relationship if… that's my own experience.

Says that sex between people is complex and it can be difficult to get men to use condoms. (Read...

When I was with a person I thought had lots of girls, I would want to use condoms. But then again it was difficult because back there, and even here with black men I would say, when… they're not very keen on condoms at all and it's very difficult. They sort of talk you out of it, they're not like… they don't really, it's not like they force you to do it, but they sometimes talk you out of it. 

And you then feel… as a woman, it's very easy to start feeling that… cos you're with a man, you want to please him or satisfy him, so you just want to do what he really wants you know. So yeah, that I found difficult. And also the fact that I could… I mean they… My experience a few times I would say is when a black man doesn't want to use condoms and the woman will say… 

If I'm saying I want to use condoms, they can easily get, you know, spoil the mood and just turn off you know sort of… it's difficult. Their mood could change as in… you know, and then maybe they'll start complaining that you know, 'I'm OK, I'm fine so why are you using condoms…?' Cos again, they're also ignorant about the risk as well, yeah. 

When she told an ex-partner about her HIV diagnosis he became threatening. (Read by an actor.)

When I was diagnosed an ex-boyfriend then, I told him, he said he was going to kill me, it was quite bad actually. I'm laughing now, it's not funny. But he actually said to me he was going to kill me if the test… if he goes on and has a test done and it comes positive, that is what he said. And he was really quite… 

It wasn't nasty, but it was quite intimidating and threatening. I knew for him that was where…. how it was the way, it was shocking to him, and that's the way he could deal with, but of course it's wrong you know, at the end of the day. So he went and tested and he came back negative, and it was only after that he was now feeling… tried to be a bit supportive and all of that. But that turned me off, you know the way he reacted and all that.

Knowing people who are dying from HIV has changed her outlook on life. (Read by an actor.)

But people still sometimes are dying, and I've lost more than 10 friends since… more I am sure, up to 15 [from HIV]. Yeah. I mean even just recently someone I know died two weeks ago, not two weeks ago, yeah, I learnt she died two weeks ago, she had died before then. 

In December someone I know died. Before then someone I… this year again, so I'd say between November and now about four people I know have died, no five now, just last week I learnt that someone else died. So, and before then again, it's been like that since the past five years, people I know have passed away. 

People that have been really close to me, it's just that they had complications before they were diagnosed. And then recently it's been heart attacks actually, heart failures, which I feel is to do with people being on protease inhibitors, yeah. 

Yeah so… so now I realise that life is fragile, I might not be here tomorrow, and all that kind of thing. 

So I… so I'm not going to, thinking so much about the future because I might not be here in the future so I'm not worrying so much about the life, I'm living. And being materialistic, thinking I need to work hard to get money so I can get that very big car and have this really nice home. I just feel, my personal happiness is most important, even if I have very little, as long as I'm really happy you know.

Talks about accepting as well as 'fighting' HIV so as to support health & wellbeing. (Read by an...

But with medication, it works. The medication works and you know, there's hope. People just need to realise that once you're infected with HIV it doesn't go away, so there's nothing much you can do about that. 

The most important thing is now to live with it and try to fight the disease and be positive and strong. 

And a lot of it's to do with the mind as well I think, yeah, cos I think if you have a positive mind you're determined not to let it get to you and get you ill. And you're determined to get better or stay well, then that will happen. But if people allow it to depress them then it doesn't help because when you're depressed then it will affect your CD4 count.