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HIV

Getting an HIV positive diagnosis

People we interviewed got tested for HIV for a variety of reasons, including:

  • Concerns that they had been at risk
  • Becoming ill (because HIV had already damaged their immune system)
  • Being tested for HIV as part of routine tests e.g. during pregnancy care
  • Wanting to get early treatment because they thought they may have HIV
  • Experiencing an illness shortly after being infected with HIV (seroconversion illness - see Terrence Higgins Trust's website).

Many people said you need to be prepared to get a positive result if you get tested':'it's a lot to take in,' said one man.

 

It took him some time before he was prepared to go for a HIV test.

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Age at interview: 49
Sex: Male
Age at diagnosis: 28
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So he (his ex-partner) actually came to me and told me, '[Name], I think you should go for a check-up.' And I went, 'Why?' as you do. And he sort of turns around and says, 'Well I have got this Aids virus which'' as it was known in them days. There wasn't much information around about HIV or Aids. It was always very clearly identified as the Aids virus. You were also known as aids sufferers you know, and there are all sorts of political clich's that was going around then. But anyway [name] came to me my partner, and in fact he came with his wife I invited them over for dinner, because I still wanted to be his friend although he had got married. So I invited them over for dinner anyway, his wife went up to the toilet and he pulled me to one side and he says I think you had better go for a blood test. It took me about six months to actually physically go for a blood test because I wasn't quite sure what my own personal reaction was going to be anyway, especially in the light of... we had heard so much about it.
 

Some people said they knew little about HIV - and were fearful - before they got tested. Some even avoided HIV testing because they did not want to get a positive diagnosis. One woman said she struggled until she was a 'walking corpse' because she believed she had to be strong for her family.

“In the past, HIV testing was usually preceded by lengthy pre-test counselling, but this is no longer considered necessary in the UK, unless someone requests or needs it.”- NAM aidsmap 2017

Counselling after testing should be offered, and consultations can be completely confidential or anonymous. Some said that they suspected their test was positive because there were so many staff in the consulting room when they went back for results. In some clinics it is now possible to get results back on the same day as testing and a finger prick test known as a 'rapid test' can give a result in 20 minutes.

Sometimes people felt obliged to have a test. One man said his GP 'politely insisted on the HIV blood test.' Another said his consultant 'insisted' he have the test (testing cannot be done without the persons consent). Yet another was just told he was being tested for HIV 'routinely.' People who are not involved in deciding about their test can feel less prepared to cope with a HIV diagnosis.

Where to get tests for HIV

HIV tests are available free and confidentially from:
• sexual health clinics
• HIV testing centres such as Terrence Higgins Trust Fastest Centres (where rapid tests are available)
• a GP /family doctor.

Normally a blood sample is sent to a laboratory for testing. The results can be ready in some places within a day or can take up to a week later. Some local and National HIV charities are able to provide testing services and some of these like the Terrence Higgins Trust Fastest Centres can offer a finger prick 'rapid test' which will give a result within minutes. People You can also test at home by ordering a free postal test kit.

Testing at home

Testing at home is now an option. After receiving a test kit, a sample of blood is collected from a finger, then the sample is posted to a laboratory. A week or so later the laboratory will contact you about the results.

There are also oral HIV tests that get a result from saliva (antibodies that can be tested for are present in the spit of an infected person - but HIV can’t be caught from saliva). Some postal testing schemes offer saliva tests.

Getting the test result

Waiting for a test result can be a very anxious time: 'The waiting part of it was excruciating'. And it can be more difficult if you are only prepared to hear that you are HIV negative and not HIV positive. Many thought that HIV only happened to other people: 'I just thought it wouldn't happen to me,' said one woman. 'I was really furious because I said it can't be… I was a respectably married man with children,' said one man.

 

What it felt like going for a HIV test result.

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Age at interview: 41
Sex: Male
Age at diagnosis: 38
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I was apprehensive. The experience was a bit mystifying. Because'

Why is that?

It felt as if I'd like' As soon as I walked in to the hospital I was like walking on the, a sheet of thin ice. I thought well it's either' I am either going to get all of the way across it and survive or otherwise I mean it's going to break in. And that's it. And, and, what, what was' What I'm trying to say about that is, is that if, if, if there's bad news I'm going to go under. And if it's good news I'm going to stay on the top.
 

Some health professionals were more skilled than others at breaking bad news. People appreciated it when their health professionals were easy to understand, calm, could convey empathy and allowed them time to react without overwhelming them with information. One man said, 'When you get told something quite negative, you don't remember the positive.' Also, when people come from overseas, language, cultural and knowledge differences can make it hard to understand what is being said. And people did not like it when professionals seemed cold and unhelpful when giving them the news. People who went to HIV charities for testing and were given the diagnosis by a volunteer, who was HIV positive, commented on the sensitive manner in which they were dealt with and the support they got.

 

He thought that a 'positive' test result was a good thing and so at first could not understand...

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Age at interview: 34
Sex: Male
Age at diagnosis: 30
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And she says, 'How are you doing?' You know, 'You're here to find out your result and everything.' And say, 'Yes.' And she's just going… flick through the file like 10 minutes. Maybe she didn't find… I, I looked so happy, I was so excited. You know, everything's… Is… I tell my… I convinced myself everything will be fine. 

And I wasn't expecting anything. So she was just going through, over and over and over again. Again and again and again. I asked, 'Is everything Ok?' She say, 'Yes, yes, I'm just checking a few more details, so I…' Then she put the file down. And she said, 'There's… The test come positive.' I was happy. I… Positive in term… I take it different way. So I thought it's good, isn't it? Yes. Positive is good result. 

She said , 'No, no, no. Your HIV test is positive.' 'OK. But…' I was so panicked. I panicked. I can't understand exactly what she trying to say. HIV positive. Positive in my terms is good. Because I never know anything about HIV or AIDS anything.

 

Her doctor told her about her HIV status calmly, with empathy and advice, allowing her space to...

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Age at interview: 44
Sex: Female
Age at diagnosis: 44
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I thought she disseminated the news quite well. That's what I thought. She, she was quite calm with it. She didn't, she didn't panic. And she, she was quite empathetic. You could see it in her eyes. She was feeling for me as well. And she was, she was quite good. She held my hand. And I just looked at her. And then she… Eventually she… We… She kept quiet after that. 

And she said, 'Do you think you want to talk to anybody?' I said, 'Not at the moment. I don't feel like it.' Then she said… She did tell me also about the available services, you know. After a while she did talk about the available services that… the counselling services in that are around the hospital. 

And she, she did tell me I've got to think about it, which people I do want to talk to, or to tell. To disseminate the news. And I thought that was quite good. I, I… At that time I don't think I cried. I just, I just… Well, I was just too numb. I just looked at her. I just wanted to be left alone…

Initially, many people said they were in shock on hearing the news they had HIV' 'A whole series of things flashed through my mind in seconds'; 'My knees buckled'; 'I did not know how to absorb it.'

In the days and months following a positive result people can feel overwhelmed, angry, numbed, confused and depressed. People may also isolate and neglect themselves, and even think about suicide.

 
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He felt depressed and useless after his HIV diagnosis.

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Age at interview: 47
Sex: Male
Age at diagnosis: 41
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And I felt myself very bad and I collapsed. I collapsed. So I was taken by ambulance to the nearest hospital. I was' and the blood was taken. But this, and the next day, it was 1999. And the next day the doctor came to my place where I was located. And said, '[Name] you know I've got two bad news for you.' 'OK which one, what the first?' 'The first you've got Hepatitis C and Hepatitis B', it was the ... it was just one. Yeah so, 'What the next one?' 'The next one you've got HIV. HIV.'

And the first two month, even more, were completely stressful for me. And I couldn't find place for me. I was thinking that I could just survive. I can't live properly now. What my wife, what my parents' how will they accept my illnesses? And, and basically I just, I didn't have any hope to meet them. Because I thought now I'm just useless for them. I'm just like a, like a heavy, very heavy load for them.

One man pointed out that HIV, 'cannot be undone, it is a bereavement… Being diagnosed HIV positive has taught me you can get your fingers burnt'. Another said an 'HIV diagnosis is a death of the negative individual.'

 

For this health professional and his colleagues it was difficult for him to become a patient. ...

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Age at interview: 52
Sex: Male
Age at diagnosis: 42
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I suppose it's drummed into you [sigh] in nursing, or it used to be, that you didn't go off sick unless you were very sick, unless you were really ill. Otherwise you, you come on duty. I, I was able to… to sort of do that because having been in the Navy that was the sort of discipline we had in the Navy. So I was able to carry that on really. 

So I used to go into work on my dying knees sometimes, but but it was always instilled into you that you don't take time off unless, unless you're really ill. And I couldn't come to terms with the fact that I'd looked after…. my speciality I suppose was the terminally ill. I couldn't come to terms with the fact that this virus was threatening my life I suppose. 

I couldn't come to terms with the fact that I was now a patient and that I had a potentially fatal illness. Maybe I didn't want to, maybe it was denial, maybe… I don't know what it was, but, but I was still in, in professional mode I suppose. In fact, I gave the nurses and the doctors hell for quite some time because... and then in the end I had to admit, and I used to say to them, 'Look, I'm the patient now, I'm not a member of staff', because it worked in reverse. Where you get the doctors and the nurses not actually telling you the whole story, because they think you should know it already. 

And that used to infuriate me, because I'd say, 'Well look, I've come to the… I've come to the realisation now that I am a patient, I'm not a member of staff any more.'

Some people without enough information assumed that HIV was the same thing as having Aids. 'I didn't have any knowledge which was a disaster,' said one man. Regardless of how educated people were or when they were diagnosed, it was initially difficult for many people to get over the idea that HIV was not a death sentence.

 

She initially thought being HIV positive meant dying and so felt hopeless. (Read by an actor.)

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Age at interview: 34
Sex: Female
Age at diagnosis: 31
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Then the following morning they came and they told me that I was HIV positive. It was very bad moment for me. Very bad, because I didn't know that I was HIV positive. I was just thinking maybe it's just TB, it's common in…. every way. I feel really hopeless. 

I just feel, knowing, you're told you're HIV, the next thing you just feel that you are like a grave, you're waiting to die. That's… what, that's how I feel. So I as so depressed I couldn't even bother to think about…. I mean anything. Eating no, washing no, even talking. You just feel it's better to die quick, before I suffer much.

Some people were not shocked by news they were HIV positive, especially those who were prepared for a positive result.

 

His partner tested positive with HIV so he prepared himself for being positive also. (Read by an...

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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. Testing wasn't hard for me - I just knew to myself that I had gotten it. The odds were in favour of me being positive, so that's what I prepared myself for. 

Some people regretted that they did not allow themselves enough time after a diagnosis to deal with their news about being positive: 'I went back to work and… privately panicked all day.'

In the long run

It can take a long time for people to be able to emotionally accept and cope with being HIV positive. 'Straight away I said there isn't any HIV,' said one woman. Some African men and women thought that it takes time for African men in particular to accept their HIV status.

 

It took him a year until he was able to express his real feelings about being diagnosed HIV...

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Age at interview: 30
Sex: Male
Age at diagnosis: 27
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The first response wasn't to go, 'Oh my God, argh!' It was to say, 'Well, at least I'm a, a white gay middle class man in a developed country.' You know, that really was… I think the second year of my diagnosis was really then thinking about feelings. And I think a pattern in life had been to over-rationalise… As a, as a sort of coping mechanism, maybe. 

And also just because, that's the way I am. But the second year was much more about connecting with my feelings about me, anyway generally. And my feelings about life.

But also about HIV diagnosis. And sort of actually… Rather than just saying, 'Oh well, shit happens. And it's… You know, it is shit, but I'll get this, this, this and this out of it.' And I've rationalised, rationalised, rationalised. Just thinking… Actually, for the first time since telling a couple of very close friends, sort of getting, yes, a bit upset about it. And a bit angry about it.

 

Says that African men tend to go into denial when diagnosed with HIV. (Read by an actor.)

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Age at interview: 45
Sex: Male
Age at diagnosis: 40
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You find that, if you compare with men, women tend to sort of look inside themselves you know, inside, say well you know, it's their responsibility they are, they are positive. You know that's the nature of women. They try to embrace that concept, and even if they are sort of frustrated or… you know with the an, with the anger, but it's something which they want to express internally. 

And this is demonstrated in many ways, sometimes maybe getting closer to God or something, you know. Because it's something they accept and want to do something about, yeah. And that's the nature of women which is, this is totally different from men. 

When men are diagnosed, at the point of diagnosis, the first thing is to deny. Basically they start looking perhaps 5, 10 years ago. Where? Who was supposed to be responsible? You know. So they forget about how they behaved sexually or what, but they just want to, to point at someone else. 

Over time people became better at dealing with being HIV positive, and they saw that there could be some advantages: 'I think my life's a bit more together since my diagnosis… it helped me work out a lot of things about myself.' Those we talked to often encouraged others to come forward for testing early because of the benefits of starting early on treatments. Modern HIV drugs can save the immune system before it gets damaged and HIV clinics provide good support to help people cope with their diagnosis and living with HIV.

Last reviewed May 2017.

Last updated May 2017.

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