Coping with a positive HIV test

Hearing that your HIV test is positive can be shocking, but many people with HIV live a long and healthy life. Find out how to cope with a positive test result and where to go for support if you need it.

There's no right or wrong way to feel when you test positive for HIV, but there are things you can do to help you cope with the result. Read the information below or go straight to the advice on:

Angela Reynolds of the Terrence Higgins Trust (THT) says it's important to remember that HIV treatments have improved. This means HIV is now a manageable long-term condition. "If you're tested early and get appropriate healthcare and treatment, your life expectancy is normal," she says.

Your emotions

You may feel a range of emotions when you get your test results. This could include shock, numbness, denial, anger, sadness and frustration. It's perfectly normal and understandable to feel any of these. "Some people might also feel relief that they finally know the truth," says Reynolds.

You may also feel isolated and alone, even if you have family and friends around you. Whatever you feel, you don't have to go through it alone, and there are ways you can help yourself cope better.

Getting the test result

You will usually be given your results in person. The doctor, nurse or health adviser will do another HIV test to confirm the result, assess your current health and refer you to specialist HIV services. They will also talk to you about how you feel and help you think about where you can get support.

"They may ask you what your plans are for the next few days, who is at home for you, and where you are going to go after this appointment," says Reynolds. "They will also give you details of organisations you can contact if you want to."

The doctor, nurse or health adviser will also talk about safer sex and the importance of using a condom for vaginal, anal and oral sex to avoid passing on the virus to a sexual partner.

As part of the discussion about safer sex, the doctor or nurse may discuss how you can change your behaviour to prevent passing the virus on. Find out more about preventing transmission of HIV.

'False positive' HIV test results

HIV tests have been developed to be especially sensitive and sometimes an HIV test will give a positive result even when there are no HIV antibodies in the blood. This is known as a "false positive".

 

Because of this, all positive results must be confirmed by another test method.

Getting up-to-date information

"It's not unusual to feel shocked and unable to take everything in," says Reynolds. "Don't feel you have to remember everything in one go. You should be given written information, and you can always ask questions of your medical team or a helpline."

Find out as much as you can about HIV, its treatments and side effects. "Talk to health professionals and use reliable websites," says Reynolds. "This will dispel any myths you hear about HIV. It will also help you understand the information you are told about your condition, and help you ask the right questions of the team who provide your care."

Don't rely on information you've heard in the past or which may be out of date. Make sure the information you have is accurate. Up-to-date, accurate information is available from national services such as THT, your local HIV services, HIV information from NHS Choices.   

Learning to cope

Accepting that you're HIV positive can be the first step in getting on with your life. "Be honest with yourself," advises Reynolds. "You will have this for the rest of your life. But remember that although HIV is not curable, it is treatable."

You might imagine that you'll be ill all the time and will have to stop work, but this isn't necessarily the case. "Most people carry on working and don't have to give up sex and relationships forever," says Reynolds. "After the first shock of diagnosis, most people cope over time. There's a lot of support to help you."

Try not to keep your feelings to yourself. If you don't feel you can talk to friends or family, try talking to your doctor, nurse or a counsellor, or call a helpline. Find counselling services near you.

Websites such as namlife and healthtalkonline can guide you through the first few weeks and months after your diagnosis. They can also give you an insight into how other people have coped with an HIV diagnosis and how it has affected their lives.

Your strengths

Reynolds suggests learning from a time in the past when you dealt with a difficult situation. "Everyone has different ways of coping," she says. "If you look back at how you have coped in the past, you might be able to identify what helped you cope before. This can give you confidence that you'll be able to cope with this new situation. If you feel you could have coped better, think what you could do differently now. For example, if you didn't talk to anyone the last time you had a problem in your life, you could talk to a health adviser this time. Work out in advance what your coping strategy will be."

Talking to others

Talking about what you're going through can help, but think carefully about who you tell about your diagnosis.

"Try and stay in control of who you disclose your health status to," suggests Reynolds. "Don’t rush into telling anyone. Work out why you want to tell them and think of the potential consequences, for example if they tell someone else. If you decide to tell them, work out how you will answer any questions they might ask, such as 'How did you get it?'"

Find out more about telling people you're HIV positive in the living with HIV section. If your family or partner would like support to help them cope with your diagnosis, they can also contact HIV organisations. 

As well as talking to a doctor, nurse, friends or family about how you're feeling, you might also want to meet other people with HIV. Finding out how other people have coped with a positive diagnosis, and hearing about their experiences of living with HIV, can be helpful for some people. There are support groups for people who have recently found out they're HIV positive. Your GP, HIV clinic or a helpline can let you know what's available in your area.

There are also support groups for specific people, such as young people, women, gay people, people from Africa and people who are HIV negative and have a partner who is HIV positive.

The website healthtalkonline has videos and articles about people's experiences of living with HIV, including getting an HIV diagnosis.

If you're feeling depressed

It's normal to feel as though you're not coping at times, to stop enjoying being with friends and family, or to feel sad or have trouble sleeping. However, if these feelings last a long time or you continue to feel overwhelmed by them, you may have depression. Get help as soon as possible as you may need treatment. Your GP, HIV clinic or local mental health services can all help you.  

Diagnosis during pregnancy

Pregnant women in the UK are offered an HIV test as part of routine antenatal care. Finding out you're HIV positive when you're pregnant can be very difficult for you and your partner. Your midwife and HIV services will support you and help reduce the risk to your baby. It's possible to give birth to a healthy baby who is HIV negative. Find out more about HIV, pregnancy and women's health on the i-Base website.

For more information, go to:

You can also find HIV information in lots of different languages at aidsmap: translations.

Page last reviewed: 09/11/2012

Next review due: 09/11/2014

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