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HIV

How people became infected with HIV

It was usually difficult for people to pin point the time they got infected with HIV since the effects of HIV are not immediate' There can be a 'window period' of up to 3 months from infection until the body produces antibodies to HIV (i.e. seroconversion - where a person changes from being HIV negative to HIV positive). And AIDS may only develop many years later if at all. 

 

Was able to identify the time he seroconverted because he and his partner tested together and his...

Was able to identify the time he seroconverted because he and his partner tested together and his...

Age at interview: 39
Sex: Male
Age at diagnosis: 20
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But we both decided that we would go for a test together. So off we trundled. And this, this was in [name of small city]. Off we trundled to the [name] Hospital to have our tests. And his came back positive, and mine came back negative, again. And funnily enough each of those negative tests' After my friend had told me that he was positive, each of the negative tests, actually I, I didn't really believe it could possibly be negative. Because of the things that we'd been up to. And it was just infuriating. I just thought, well, there's no way that that can be negative. It must be a case of waiting for seroconversion. That's in retrospect. But I thought I, I obviously haven't yet produced antibodies. I didn't at that time fully understand what seroconversion was. So anyway, we'd gone for our test together. This was [name of partner] in [name of small city]. And his came back positive. Mine was still negative. So they immediately called me back in to redraw the blood and retest. And it came back as a new positive. So I, I know roughly within a couple of weeks when I seroconverted. And that was April 1986.

Some people experienced a 'seroconversion illness' with lack of energy, tiredness, sweats, joint pains, flu-like symptoms, gum infections, weight loss, glandular fever like symptoms and rashes. One man said he had lost a stone in weight and, not suspecting the cause, had been rather pleased. During a seroconversion illness people may take a few months to become HIV positive. One man's doctor told him, 'Even though your tests are negative, I am convinced you are HIV positive.' Many other people did not recall having a seroconversion illness either because it was too mild or they did not experience any symptoms. Other people did not want to know if the symptoms they had were due to HIV because of fear. One man who had a seroconversion illness said he, 'Could not afford to think about it.'

 

Describes his seroconversion illness.

Describes his seroconversion illness.

Age at interview: 38
Sex: Male
Age at diagnosis: 24
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I was reading a sort of Ian McEwen novel in bed' on a Friday night in late April and I had a bit of a sore throat. And the next morning I woke up and I felt a bit tired and I still went off to the gym and I really noticed that I you know, I wasn't anywhere near' I didn't have anywhere near my normal strength. And then the next morning I was very, very fluey and I though you know, it is probably just flu, and it carried on for a week' I was in bed for a week. Hearing this program on radio 4 about HIV and it wasn't about seroconversion illness or anything like that. And it had this doctor on about how easy it probably was to catch and how, the' couldn't rule out it had been spreading saliva kind of thing and this Swedish doctor. What a load of bollocks that was. Anyway, but then anyway I started coughing and it went into the second week of illness and I still wasn't getting any better. And you know looking back on it I had all the things, it was a sore throat, I got a terrible headache and I sort of got slightly better and then I got' it's like a sort of pain in my chest and I started coughing incredibly badly, really, really deep coughing. And you know vomiting big thick gobbits of blood because I was coughing so badly. And it was a bank holiday weekend and all my fucking friends went away. Which it was like you know, and everyone thought I was getting better so they all went away and I couldn't swallow because the pain in my lungs was so bad. And I ended up going back home to my mum and dads'

People sometimes got an HIV diagnosis at the time of seroconversion particularly if they were very ill and needed to be hospitalised. Some gay men knew about seroconversion illness and strongly suspected what was happening to them when they had symptoms. 

Others said they or their health professionals sometimes mistook their seroconversion illness for allergies, a bad flu, glandular fever or even syphilis. After seroconversion people usually become well and it can be many years before they develop any HIV-related illnesses or AIDS if at all.

When and how infection happened
People believed they were infected in a wide range of ways including:

  • unprotected anal and vaginal sex in casual encounters
  • unprotected sex in relationships: 'I was in a steady relationship, but then I realised my relationship was not that steady,' said one man.
  • sexual assault and rape 
  • injecting drugs
  • by being unlucky or 'vulnerable' even when having safe sex: 'We were careful almost to the point of being clinical. So it was just bad luck really,' said one man. 'I was burning the candle at both ends… you do become more vulnerable,' said another man.
  • use of contaminated medical equipment & blood transfusions (e.g. in Africa)
 

Seroconverted after his drink was spiked at a bar and he was sexually assaulted.

Seroconverted after his drink was spiked at a bar and he was sexually assaulted.

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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My diagnosis wasn't so much a shock because I knew pretty much from elimination that I probably was HIV positive. I was sexually assaulted in March of this year a month before I was due to move to London. One of my little weekend visits turned into a bit of a Rohypnol nightmare. So from that point to this it's, it's quite an interesting sort of road really, that I've sort of come up. But I started to seroconvert the week leading up to Christmas, which obviously I didn't know at the time, I just thought it was flu, but it was one of those flus that you just couldn't move, just laying about, just being pathetic. And phoning friends to do your shopping and all of that'

 

Feels he contracted HIV from a partner who was not aware of their HIV infection. (Read by an actor.)

Feels he contracted HIV from a partner who was not aware of their HIV infection. (Read by an actor.)

Age at interview: 33
Sex: Male
Age at diagnosis: 28
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All I could do is replay in my mind how I had contracted HIV. I was seeing my partner for nearly a year and he wasn't aware that he had it. 

I had been tested yearly and was fine until February of 2000. 

By July of that year I was infected and by late August I had gotten mononucleosis but it still didn't occur to me that anything was wrong until my partner began showing symptoms of shingles and his doctor told him it was very strange for him to be in his early thirties and have shingles. He was told that he should be tested for HIV and when he found out he was positive then I instinctively knew I had contracted it as well.

Some people felt they could pin point the incident where they got HIV. Some of these people said that drugs, alcohol or psychological difficulties (e.g. depression) played a part in their risky sex at the time.

 

He suddenly remembered a drunken incident of unsafe sex just before his seroconversion illness. ...

He suddenly remembered a drunken incident of unsafe sex just before his seroconversion illness. ...

Age at interview: 40
Sex: Male
Age at diagnosis: 37
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I was listening to the radio. And there was a…coverage of a, of a conference on. And I suddenly had this awful remembrance of a drunken night in town. And thinking, bastard… If it wasn't that, it… 

And then I remembered that I… that neither of us had had a rubber. You know, and it seemed like a good idea. I don't do sex drunk. Normally. That was 5… 4 years beforehand. And after that I'd come out in an… But I'd never even heard of seroconversion. 

I'd come out with an enormous rash I… Everything that, that I've subsequently learnt was to do with seroconvertion.

Many people gave up wondering how they were infected because the question brought up painful memories, could never be answered for sure and did not change the fact they had HIV. One man said, 'I don't know whether I infected him or he infected me… I have no idea and we don't know when,' said one man about his relationship.

 

Initially wondered how she got HIV but then felt the question could not be usefully answered. ...

Initially wondered how she got HIV but then felt the question could not be usefully answered. ...

Age at interview: 44
Sex: Female
Age at diagnosis: 44
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And I think oh my God. How can… How did I get this thing? That's what I said to myself. And then I said, 'I'll never know, really, wh- how I got it.' Because I was once married. It could be that I had it even before the blood transfusion. It could be. It could be, it could be from my partner. Who knows? Because…I don't, I don't know, really. 

But we just thought probably it's the blood. Because that, that did seem the obvious thing. But I'll never know really the… where it really came from. And I said to myself, by the way, 'Even if I know where it comes from, where… how I got it, it's useless.' There's no point now. It's too late now. I've just to think and get on with my life.

 

Says the question about how her HIV infection happened is unhelpful and she feels annoyed that...

Says the question about how her HIV infection happened is unhelpful and she feels annoyed that...

Age at interview: 50
Sex: Female
Age at diagnosis: 42
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Well as I say it's my husband, maybe he is not the one. I think it is the clinic, maybe it is not the clinic. Or maybe it's your ex-boyfriend you met before because sometimes it can stay in your system for years without coming out. So it's very difficult to pinpoint and say it's this one. And that is the question we always get when we go to some of the GPs, the GPs, the question they ask you, 'How did you get it? Do you know who gave it to you?' It's so annoying, its so annoying. You know, when someone is asking you that silly question 'How did you get it?' I went through that a long time ago when I was diagnosed and you know the memories still come back and the wound is open again. It is so awful. And they should understand that… And if I knew I was going to get it I think I would have run away from HIV, because I would know that HIV is coming. But I didn't know. I didn't buy it!

Although people do sometimes get HIV from having unsafe sex only once, HIV transmission does not necessarily happen every time you have unprotected sex with an HIV positive partner. The risk is very low indeed if the HIV positive person is on effective treatment (i.e. their viral load is undetectable).

 

Talks about the risk of getting HIV in unsafe sex.

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Talks about the risk of getting HIV in unsafe sex.

Age at interview: 48
Sex: Male
Age at diagnosis: 29
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And it's a, well the thing is that HIV is not a contact infection, so you can't say' If I have unprotected sex with somebody with HIV therefore I must then be HIV positive, I must pick the infection up. That is not true, right. There has to be, several factors must come into play. How much viral load is in the genital tract, what sort of sex you have, whether there's any trauma there, how often you do it, those sorts of things come, come into play. You know I know of couples where one has been admitted to hospital with very little immunity and an opportunistic infection, tested the partner, partner's negative, right. That's not unheard of you know. So HIV is not an automatic infection.

 

He assumed he had got HIV from his long-term partner and so had unprotected sex with a HIV...

He assumed he had got HIV from his long-term partner and so had unprotected sex with a HIV...

Age at interview: 63
Sex: Male
Age at diagnosis: 48
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I said about the way I got HIV, and we're going back over 15 years now, and to a different world. I had a friend who'd been looking after his partner in the [name of Charity] for a long, long time as he died. And we were, young, much younger. I found him very attractive. I went to the funeral finally of his partner, and we had a fair bit to drink at the party afterwards, then the two of us went out for dinner nearby here. And we had more to drink and sort of came home between the two of us on three legs here and' and it was a sort of' And remember of course I assumed' I knew, I assumed that I had HIV at the time. And I knew he had, and we were sort of comforting each other really, it was a sort of' Very affectionate, very intimate session of comforting after the funeral of his partner. And actually we had a lovely night! But I was certainly exposed to infection and' and in' of course in proper time afterwards I had my seroconversion illness. I never told him that I'd got HIV, he died not all that long afterwards. I felt very much that it was certainly nothing that I could blame him for. That it was a joint misadventure and it had actually been lovely, being together that night. The HIV was a most unfortunate consequence.

People who believed they might have been exposed to HIV in the past 72 hours could get access to Post Exposure Prophylaxis (PEP), although ideally this should be started within 24 hours of exposure. PEP is a month-long course of HIV drugs the same ones taken by people with HIV. The sooner PEP is started, the more likely it is to work. For PEP to work the drugs must be taken for four weeks. If someone stops taking it before 28 days it is unlikely that it will work. It is accessible at all sexual health clinics or, when these are closed, Accident & Emergency departments. One man said, 'If a condom splits on a weekend, I've got to go to Accident & Emergency in order to get hold of this treatment. There should be a clinic somewhere you can go and pick up these pills to prevent someone else getting the virus.'

Last reviewed May 2017.

Last updated May 2017.

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