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.

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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.

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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.

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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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.'

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.

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

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.

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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