Living Stories: Home page

Finding out

Play MP3 audio clip

Amanda: Widow of Andrew, who died as a young adult.

I would say actually the point of diagnosis did start a progress of grieving and a process of bereavement. It wasn't the same as when I lost him for real. But I know I did, I just. I suppose at that moment I felt I lost my future with him.

Play MP3 audio clip

Ann Marie and John: Parents of Christopher who died as a young adult.

JOHN: He wasn't told till he was fourteen. By that time we were worried about the possibility of him becoming sexually active, because a lot of young people do. We'd been up at the hospital and I decided when we came back that I was going to sit him down, and we spoke about it then. I explained that he had contracted HIV, through the factor VIII. We really didn't know how it was going to affect him, but he was very fit, and people all over the world were working towards a cure for it. And that he had to think about the possibilities that as he gets older, and if he gets in a relationship, he may have sex, and he could in theory pass it on to a partner, and would need to start looking at safe sex even from that age. That didn't last very long, because he just burst into tears and just asked when he was going to die. So, that was really that.

Play MP3 audio clip

Ann Marie and John: Parents of Christopher who died as a young adult.

ANN MARIE: We were told when he was seven. I'd actually taken him up to a clinic and I was sitting in the corridor with him, and one of the doctors came out and says, 'Ann Marie, sorry it's taking a wee bit longer today,' she says, 'but there's a lot of the kids have got HIV, and Chris was one of them. But we'll talk about it to you when you come in'.
JOHN: At that point the only thing we knew about HIV was some gay people had it, and they would die, and that's about as much as we knew. And to be told that way in a hospital corridor, and then Ann Marie coming home and telling me about it, we just... We couldn't sleep for days.
ANN MARIE: We just didn't know what to expect, what it involved, how it happened. I mean, 'There you go, Ann Marie, he's got HIV. Bye'.

Play MP3 audio clip

David and Sue: Parents of Robert, who is living with haemophilia and HIV.

DAVID: I remember when he was diagnosed I went with him to the hospital, the two of us coming away, and we'd just been told, yes he has HTLV 3 or 4, something like that. But he had a 50 per cent chance of living for the next two years and if he lived for two years he'd be all right after that. Absolute rubbish of course! But I remember coming away and thinking, what do you say? How do you build up 50 per cent? What can I say to him? It was very difficult to think of something to say.

Play MP3 audio clip

David and Sue: Parents of Robert, who is living with haemophilia and HIV.

SUE: I imagine I must've felt, 'How can this be happening? This is unbelievable. And thank you very much, Mrs Thatcher and your bloody government for cancelling the medical amount of money that was supposed to be going into cleaning up blood supplies, so we didn't need to have dirty blood from America with whatever diseases was in it'. After the haemophilia we've got all through all that, only to be hit with this which was just completely unnecessary.

Play MP3 audio clip

Diana: Mother of Stuart, who died as a young adult.

We actually told Stuart straight away. If we hadn't have done it then, we may have hidden it for a while. There's probably two thoughts with children. You either tell them the truth, and help them make their decisions and learn to live with things. Or you hide it from them and then have to tell them later on. We have always believed that our kids have every right to know what's going on, especially when it comes to them. How can you take that away from them? I don't believe you can. We don't believe you can. So he knew, he always knew that he could get really poorly and could die.

Play MP3 audio clip

Edna: Mother of Robert.

Anyway it got to about 1986, I was so worried and I thought, somehow I don't know what it was, I couldn't ask him. So I went down to see our family doctor. So when I got down there, I mean I should have known because he was sixteen. I went in, and I said, 'Dr Paul, can you tell me whether Robert is HIV positive or not?' He said, 'I can't tell you,' he said, 'Robert is over sixteen and it's confidential'. 'Oh,' I said, 'I am sorry, I didn't realise that.' I said, 'I should ask him but I just find it very difficult.' And he said, 'Well, that's the best thing you can do, is to ask him, have a talk to him about it'. So I thought, what a fool, and I came home.

Play MP3 audio clip

Gloria: Mother of Andrew.

The effects of what that news had upon us as a family was absolutely traumatic, because it just changed us from being just an ordinary family. It was just terrible, like living in a vacuum where you were in this vacuum, nobody knew anything that was going on in this house and in our lives, and we could see everybody else just living their life. And we were here, we were stuck in this vacuum with no way out.

Play MP3 audio clip

Heather: Wife of Michael.

She [our daughter] was used to going to the hospital and being treated a certain way. And when it was all completely different, she knew. And it didn't take her very long to work out what it was either. But I know she caught on from the adverts that were on the television with the iceberg, she worked it out from that. She said, 'That's what's wrong with Dad, isn't it?' I just said, 'Yes'. I didn't feel that it was fair to her to say no, because it was true. She was about four and a half, four.

Play MP3 audio clip

Jan and Mel: Parents of Luke who died as a young adult.

MEL: ...but I was called in to see the paediatrician who told us that there was a problem with batches of Factor VIII and it was quite likely that Luke had had blood from Factor VIII from those batches. He needed to have a blood test. And that was we had at that time.
JAN: But that was all we were told, nothing was told to us after they took the blood. We never officially were told he was HIV positive, or he had the AIDS virus.

Play MP3 audio clip

Mary S: Mother of Colin, who died as an adult.

So he went into Jimmy's at nine months old and he was in a week. They took blood tests from him. When I could take him home, they came to me and said, 'He's got haemophilia', which I didn't know anything about, never heard it before, the name, 'And you must take him home and wrap him up in cotton wool'. I said, 'Well, how do I do that?' He says, 'Well', he says, 'That's something you'll have to find out'.

Play MP3 audio clip

Pam: Wife of Dennis who died as an adult. She is living with HIV.

Very, very upset because that was his worst fear, that I was going to become infected and I did. But no, I mean he was just devastated. It was the worst thing that could happen to him, apart from his own diagnosis. And then, of course there were all the fears of, I mean he said some funny things, he said to me, 'Who's going to look after...?' 'Nobody will want you when I've gone.' And things like that, awful thoughts, 'Who's going to look after you?'