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Interview 34

Age at interview: 63
Age at diagnosis: 51
Brief Outline: His wife took the news about his HIV very badly and their relationship broke up. He felt depressed and had suicidal thoughts. The care of HIV clinic staff and support groups were very important to his survival. (Video and audio clips read by an actor.)
Background: A 63 year old man originally from Africa, who has been in the UK for many decades. A British Citizen, he was married with children when he was diagnosed in 1993 with HIV.

More about me...

Age at interview' 63

Age at diagnosis' 51

Sex' Male

Background' A 63 year old British citizen, originally from Africa, who has been in the UK for many decades. He was diagnosed with HIV in 1993 after presenting to his GP with rashes and fever. 

Outline' A 63 year old man originally from Africa, who has been in the UK for many decades. A British Citizen, he was married with children when he was diagnosed with HIV in 1993 after presenting to his GP with rashes and fever. His wife took the news very badly, and that was the beginning of the end of their relationship. Alternative accommodation was arranged via the hospital, although he found it difficult to carry on. He felt depressed and had suicidal thoughts. He also saw others around him die from HIV in those days, and other people gossiped about his health. The care of HIV clinic staff and support groups were very important to his survival. Eventually, he responded well to the new combination therapies (currently undetectable viral load, 400 CD4 Cells), although he does have side-effects like high cholesterol and tiredness. He also has reduced sex drive and peripheral neuropathy with pain.

(Video and audio clips read by an actor.)

 

He needed to accept that the medication would work before he took it correctly. (Read by an actor.)

He needed to accept that the medication would work before he took it correctly. (Read by an actor.)

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And at that time, in fairness, I wasn't even regular on my medication, when even the first time they put me on, you know because I felt that I'm going to die anyway, so what's the point so… That's it, that's it, I didn't, I didn't no… So it took time and especially as I said the nurses that kept you know… asking 'have you taken at the right time?', you know. 

This sort of encouragement, and I said, 'Oh it's too much you know this is… I'm going to die anyway, why should I worry?' But later on you know confidence builds up and, yeah.

 

He moved to a different HIV clinic and found the care there better. (Read by an actor.)

He moved to a different HIV clinic and found the care there better. (Read by an actor.)

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So but I have found my new hospital lots, I mean completely different from the one I used to go to, then you know, as if it's a different country you know!

I think my new hospital being bigger, the old one was just like a provincial sort of health clinic, sort of you know. The comparison, you know when I compared it. It was so different because… I mean the way the doctors behaved too, you know. They were more… they feel closer to you. 

They understand and like the, the consultant certain she was… she was very frank with me, she would tell me that really we don't know. You know and I really appreciated it, I felt really, really close, and I could discuss anything you know. And the nurses too. And I realised that the nurses were sort of the link, the connection, there was a linkage. Things that I talked to them at my home you know, they tend to pass it on to the doctors and so that was this link. 

And it gives you hope you know. Yeah, it helped a lot… they were interested in the background you know, how I was feeling, my relationships and this sort of thing you know. So not only the medical side, they were really interested in the social aspects, how I'm feeling, my housing, you know all those details. And I felt important you know, wanted.

 

Hopes a cure for HIV could help him with his current health problems.

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Hopes a cure for HIV could help him with his current health problems.

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My hope for the future is… if I could regain my hope for the future, it's to get my sight normal, so that I can do what I want to. Because it's depriving me, not only my… my eyes. I need, I need to get my voice back because they may… I don't know whether it is a side effect of the medications I'm taking, I've lost my voice. And I'm not singing well, I used to be a very good singer. I used to write very well but if I write now you would think I was just somebody, who was just beginning school. I cannot write, my hand shakes a lot. 

So if I can get treatment to get my hands OK, nothing will stop me from being what I want to do. In fact the sky would be my limit because I am a very prospective somebody. If I want to do things, yeah, I do what I want to do, you know... But my health, the HIV is costing me a lot, to me. Now they are saying that unless a cure of HIV comes, I am not… I've tried to visit most, you know health organisations or establishments. And they come to tell me that the, the, the solution to my problem… my eyes my brain or whatever, is the cure for HIV. That's what they say now, until that comes… But I don't even know whether that could come and then my problem will still be there. So if they could do anything possible to… so we have this thing as soon as possible... I mean everybody would be happy and this problem would go away.

 

Support groups can help with the free discussion of difficult topics and expression of feelings. ...

Support groups can help with the free discussion of difficult topics and expression of feelings. ...

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Yes, in a support group we are all of a kind, sort of, all have the same problem. And you realise that the pains you are having, others are having it too you know. Physical pains, emotional pains you know. And you tend to share your problems, you know. You feel well, I'm not alone. And that some are even worse off than you, you know physically and mentally too. 

So that is where the help came from and even medication we talk about medication, how you cope and what you do. You know different, different things that you, you don't have time to ask your doctor about that sort of idea. And you feel free, you know you feel free this is… we are the same, it doesn't matter whether you're from U, Ukraine or from Scotland…. That was big help, big help you know. 

And I was talking about my family break up and someone was telling me about his parents actually disowning him you know these sort of things so that, you can see that you're not alone.

 

People in his community expected him to die from Aids even though HIV is not discussed. (Read by...

People in his community expected him to die from Aids even though HIV is not discussed. (Read by...

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And I don't know, some people have been… a bit patronising you know sort of. You can feel that you know there was a time certain people were ringing up you know. Checking on me, 'Are you all right, are you all right?' You know people become overbearing because you know they have something in mind that this guy is going to die and they were expecting bad news you know. 

And then after some time that it's not going that way they tend to ease off… Yeah they don't contact me as before, you know. Whereas at that time that I was sick certain people were ringing you know, some even twice a day. You know 'Are you OK? Are you eating?'… Without telling me you know… without me telling them that I've got HIV or… But I know that they know, and they're expecting me to pass away quickly or something… 

But since they've found me fairly well now, they don't seem to have that sort of interest or don't show it, yeah so...Yes I think they're confused, and they are scared or… you know Thought that I would pass away, you know that sort of thing. Because a lot of them there was no future as far as they were concerned. It's a question of the time I'm going to die, you know. And some of them I think, the time they expected is well past now. So one or two I was told started talking that, maybe he hasn't got it?

 

Makes an appeal to the community explaining why HIV should be discussed openly and not...

Makes an appeal to the community explaining why HIV should be discussed openly and not...

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My hope is for people to be more understanding, more open you know. I wish I was in a society that I could… tell them freely and they will try and see it from the other side. Because I mean I wasn't any more promiscuous than any of my friends that I know of. We all did the same things you know, I mean some of those we shared the same people at different times, you know. 

So I wasn't any different. So if they can understand it can happen to anybody. And it's not something that should be stigmatised you know. If people can talk about it more openly and exchange ideas you know, that can only help. 

But it's so difficult because… you, you try to introduce the subject, they don't want to talk about it. So you feel, yes you are talking to the brick wall you know. So that is, it's very frustrating that aspect. So I just wish they can be more understanding and you know more open about it. 

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