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HIV

Messages to others living with HIV

'HIV is another education on its own, it is another school of its own. It enlightens you, it exposes you, and it educates you.'

The people we talked to did not want to preach to the users of this website. Instead, HIV was thought to be a very individual journey and people needed to make their own choices: 'It's a personal battle. We all react in different ways.'

 

Says that reactions to being HIV positive are all different and follow no set course. (Read by an...

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Age at interview: 30
Sex: Male
Age at diagnosis: 27
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Everyone's different. Don't expect to find the answer on this website. But it might give you some clues. I think that'd be my advice. Because I mean I think I… I mean certainly don't expect that you will feel sad for 2 weeks, then… throw yourself into work. And then come to terms with things. And then sort out your shit. And then be back on your feet again. 

Whatever… I mean don't think that your experience is going to be the same as that person's, that person's, that person's… The only bad reaction would be to say, 'Oh my God.' And throw yourself off a bridge. Because then you've got no chance of doing anything after that. You know, that's the only bad reaction, in a way. Which some people do. But just keep with it. And… it won't be the best thing that's ever happened to you. But it could have some surprising results… definitely.

However, people did talk about the things they would have liked to have known earlier, and we summarise their suggestions here:

  • Remember, you can always make some kind of choice in how you respond to the virus.
 

Describes how he reacted to - and tried to deal with - the sudden prospect that he might die.

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Age at interview: 37
Sex: Male
Age at diagnosis: 24
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And I said to the doctor at the time… and the ward doctor was my HIV doctor at that point, because he was the head of HIV services and so he did the wards as well. I said, 'What is the scenario here, what is the worst-case scenario here?' And he says, 'The worst case scenario is two months to live.' And I thought okay, okay, what do I do here… And I said okay now get me one of the counsellors, I need to speak to one of the grief counsellors, because when I was admitted, they do it as kind of a standard you know. You had… if you needed to speak to you know a chaplain or a grief counsellor or any of those things… any psychological support that you wanted and I have always said no. I'd been hospitalised before and I have said no, no, no I will deal with this with positive thinking. And I said no, get me a counsellor. And I think it was only the second time I'd ever cried over the situation. I cried when I got my AIDS diagnosis… And I cried to that counsellor and I just have to accept the fact that at that point, it was quite likely that I would die.

It is quite a shift from hope of going out dancing just a few weeks ago…

Ugh hum. To moving into a new flat, and then bang and it being kind of… Yes. I was angry as well obviously. I went back to the anger that I had got when I'd got my AIDS diagnoses. When I talked to the counsellor she asked me how angry I was. And I used some choice words. And it was… Yes, it was, it was for me finally like okay this finally maybe the end. And I did that thing of actually getting in touch with people and saying come and visit me because I thought I don't know, I don't know whether this is going to be okay or not.

  • It is your life, so take your time if you can, consider people's advice, and work out what is right for you.
 

Explains how you could deal with being preached at: You can always change your doctor if you are...

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Age at interview: 39
Sex: Male
Age at diagnosis: 18
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I think for anyone who is newly diagnosed, I think the fact is that they need information. And it's not' if they feel that they're being preached at by someone, get someone else's advice. And if you're not happy with the way your treatment is being given to you or your medication or medical advice is being given to you, go somewhere else. There's always this attitude that if you've got a doctor or a GP and you're not happy with what they' some people just feel they have to sit there and take it. If you're not happy with your GP or your doctor at your hospital, move. There is nothing stopping you, there is nothing in this country to stop you moving your healthcare to anywhere else.

  • A number of people felt it important to live in the 'now', not get caught up in fears about what the future may or may not hold: 'Live every day like it is your last,' said one man, 'And don't worry about what you can't change, because you can't change it.' 
  • Find a balanced way to live with the virus, such as avoiding 'HIV information overload,' not allowing HIV to take over your entire life, and allowing HIV to naturally settle into the background of your life. 
  • Keep your feet on the ground, learn more about yourself, be yourself and respect yourself. 
  • Remember there will always be ups and downs, 'but that is true of anyone's life'.
 

Says people should avoid allowing HIV to take over their lives and explains what they should...

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Age at interview: 37
Sex: Male
Age at diagnosis: 36
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I'm just trying to come up with some kind of little nutshell really for anyone who's just sort of been diagnosed really. The main thing is just to remember who you are. Don't forget where you've come from, your family, your friends and things like that. And don't lose sense of where you are going either' Keep focus because HIV can take you over. If you just focused everything, you know, all your energy on HIV, I think it could overrun your mind as well as your body. But if you stay focused and know exactly what you want out of life, and a lot of people don't know what they want out of life, regardless of if you're HIV or not. But I think it's a time to take stock, to sit back, think about what you want, and get on with it.

 

He has found a way to relate to the virus that makes sense of his experience. (Read by an actor.)

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Age at interview: 38
Sex: Male
Age at diagnosis: 35
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Some people I know, HIV is part of their life and it almost becomes… It becomes part of your identity in a way. Be it the people that they hang out with, the only sexual partners they'll have. The, you know, the tattoos on their body. It's all… It's very much they are, they are in that. 

But they, they're HIV, and they're almost like a professional HIV person. Like it becomes a key part of their life and their identity… And I just… Like I said, with the, with the drugs, I forget I'm taking them. I just like take them automatically. The way I put my lenses in or brush my teeth. It's becomes part of my life and it just… I don't think about it. 

I thought it would have more impact on my life when I was diagnosed. You know, I was thinking, oh, you know, it's going to be changes and this and that. And then I found that it, it wasn't. I didn't, I didn't need to… You know… All my friends know and stuff, but it just isn't an issue. Especially now since my health has stabilised.

 
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Gives advice on caring for the self and balancing HIV with the rest of your life.

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Age at interview: 46
Sex: Male
Age at diagnosis: 27
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HIV is a lot like the NHS. Nothing happens fast. Your future's in your hands, if you listen to the doc' take his advice, and do everything in moderation, then there's no reason why you will not die of something else. The future's not guaranteed to you, so when you make decisions in your life, bear that in mind. That something else could kill you. HIV's not a shield. Not, everything, not every illness that you will have is related to HIV. So don't use HIV as a coat peg. If you care more about yourself than what other people think of you, you'll cope quite nicely, with being positive.

  • Remain hopeful, since hope is realistic if you can get modern treatments.
  • 'Believe what the doctors say… that you can actually remain well… this is not the end of the line.' 
  • Remember that you may well die from a cause other than HIV! 
  • Remember that recovery may be quite slow if you have been very ill.
 

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

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Age at interview: 43
Sex: Female
Age at diagnosis: 42
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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.

  • A new diagnosis can be frightening, however, even those who had experienced anxiety or depression believed it was important to be cautiously optimistic.
 

With 8 years of experiences, he talks about how to reduce the impact of health problems.

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Age at interview: 52
Sex: Male
Age at diagnosis: 44
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Well simply be of good heart. I mean, nowadays it is possible to live a good life, a reasonably full life. And certainly I was working for a number of years before I was overcome by the effects. You have to expect that there will be occasional surprises and some rather unpleasant ones but I've' my experience has always been that I've always been able to overcome the nasty symptoms by simply traipsing back to the clinics and obtaining the appropriate medication. I mean the' I have been fortunate in that respect. And certainly without the medication I'd be dead, I would have died some years ago.

So the nasty surprises don't have to blow you out of the water is what you are saying?

No, I mean it's easier to say that than it is to actually, you know, put into effect at that time. But you, I think if you have a frame of mind whereby you're prepared for disasters, potential disasters brewing up, and then perhaps you're not prone to be quite so surprised. It's easier once it's happened once or twice to you' you know, the third or fourth time it happens you're not quite so bad. The first time or the first couple of times it can be a bit dramatic, it's true. But I mean, you just have to accept that life is going to throw up more unpleasant surprises quite by random and without any explanation and quite often without any warning. And you just have to be prepared to deal with it.

  • Even if having fun and being of good humour could be a challenge at times, remember that happiness is a part of life: 'Do the things that make you feel good.'
 

A husband and wife who both had HIV tried to find the humour in nursing their child who was ill...

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Age at interview: 40
Sex: Male
Age at diagnosis: 35
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We laughed about it, and people look at us' 'Why are you laughing?' We said but if you don't laugh, you go mad. Laughing is important, have fun you, if you don't… Well I don't know it, just, you can't wipe it out of your mind, you see what I'm saying… She [my wife] had to wear gloves and you know the sterile conditions and all that lot. And I mean you did, you laughed at it… you never… did you ever think you were going to end up a nurse? 

Do you see what I'm saying, you never trained to be… Because you couldn't have, it was an open thing, you couldn't afford to be infected at all because that would cause a lot of problems. And then you had to ensure that you gave him his medication on time, the other medication he was going through. You're literally in and out of hospitals you know… he had to be checked up all the time.

  • Accept that life is a challenge: 'Some of us went through a lot to be where we are now,' and that you sometimes need to be strong and try to think positively.
 
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Drawing from his 10 years of experience, he summarises his advice about the life 'journey' for...

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Age at interview: 39
Sex: Male
Age at diagnosis: 28
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Be strong. In all the times I get most emotional about life, it's not when I'm having a painful day or a painful moment. It's when I'm really having fun. I'm laughing or I'm dancing. And then I realise that's life. And then I get very emotional and I might lose it one day. But it's a journey. It's a journey. The end could be tomorrow. Could be 20 years time. Try to get rid of the fear. Life with fear is the biggest waste of time kind of thing you can have. Get rid of the ghost. Embrace today. Live today for tomorrow. 

I'm not saying getting drunk. It's a choice. It's a lifestyle. You have to eat. Contemplate what you are eating. You have to exercise, you know? Surround yourself with beautiful things. Have that long bath.

 

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

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Age at interview: 33
Sex: Female
Age at diagnosis: 27
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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.

  • Challenge the way that HIV is stigmatised, even if you just challenge your own ideas. 
  • Accept the HIV crisis and the fact that many people are unknowingly infected with HIV.
  • Remember that HIV positive people are valuable members of society.
 

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

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Age at interview: 63
Sex: Male
Age at diagnosis: 51
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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. 

  • Use condoms in anal and vaginal sex to protect those who are not HIV positive.
  • HIV negative people: 'Don't be blasé about it. If you're negative, stay negative.'
 

Explains some potential problems with HIV treatments that make it well worth HIV negative people...

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Age at interview: 39
Sex: Male
Age at diagnosis: 20
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But after you've failed one' a few drug therapies' And if you don't achieve undetectable viral load, ultimately sooner or later that therapy is likely to fail. Then the drug regimes do become more complex. And one of, one of the medications that I take is 4 large capsules twice a day. And I know people who are on heavier drug combinations. I currently take, I think I said, 22 tablets a day. Of which the majority are antivirals. And I think' one is for cholesterol, one is for lipids' And I think there might be a multivitamin in there as well. So, so basically 19 tablets a day which are antiviral drugs.

  • Come forward for HIV testing and take control because: 'If you know your status early enough, it can actually prolong your life, instead of waiting for your immune system to be damaged.'

Last reviewed May 2017.

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