Living with HIV

By NHS Choices 8

Psychological impact of HIV

Being diagnosed with HIV can be very distressing, and feelings of anxiety or depression are common. Your HIV clinic can provide you with counselling so that you can fully discuss your condition and your concerns.

You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your HIV clinic will have information on these.

Some people find it helpful to talk to other people who have HIV, either at a local support group or in an internet chatroom.

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Telling people about your HIV

Telling your partner and former partners

If you have HIV, it is important that your current sexual partner or any sexual partners you have had since being exposed to infection are tested and treated.

If you do not tell your sexual partners and you have unsafe sex and infect someone, they could prosecute you.

Some people can feel angry, upset or embarrassed about discussing HIV with their current or former partners. Discuss your concerns with your GP or the clinic staff. They will be able to advise you about who should be contacted and the best way to contact them.

Nobody can force you to tell any of your partners about your HIV, but it is strongly recommended that you do. Left untested and untreated, HIV can have devastating consequences and will eventually lead to death.

Telling your boss

People with HIV are protected under the Equality Act (2010). 

There is no legal obligation to tell your employer that you have HIV, unless you work in healthcare and are carrying out invasive procedures. In this case, you must tell your occupational health physician and avoid performing invasive procedures.

There is also no law to stop your employer from asking you if you have HIV.

However, the Equality Act 2010 places restrictions on the health questions that employers can ask during a job application process. Employers are allowed to ask health questions to help them decide whether you can carry out tasks that are essential for the job, and for a limited number of other reasons.

If you are asked a question that you think is not allowed under the Equality Act 2010, you can tell the employer, or you can tell the Equality and Human Rights Commission. Learn more in recruitment questions about health and disability.

If you are an employee with HIV, you may worry that if you do tell your employer, your HIV status will become public knowledge or that you may be discriminated against. On the other hand, if your boss is supportive, telling them may make it easier for adjustments to be made to your workload or for you to have time off.

The HIV organisations below have lots of information and can advise you on these and other work-related issues.

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Pregnancy

If you have HIV and become pregnant, contact your HIV clinic. This is important because:

  • Some anti-HIV medicines can harm babies, so your treatment plan will need to be reviewed.
  • Additional medicines may be needed to prevent your baby getting HIV.

Without treatment, there is a one in four chance that your baby will develop HIV. With treatment, the risk is less than one in a hundred.

Advances in treatment mean that a normal delivery will not usually increase the risk of transmission from mother to baby for women who have an undetectable viral count and whose HIV is well managed. For some women, a caesarean section may still be recommended.

Discuss the risks and benefits of each delivery method with the staff at your HIV clinic. The final decision about how your baby is delivered is yours, and unless any unforeseen complications make a caesarean section necessary, staff will respect that decision.

If you have HIV, do not breastfeed your baby because the virus can be transmitted through breast milk.

If you or your partner has HIV, fertility treatments may be available that will allow you to conceive a child without putting either of you at risk of infection.

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Opportunistic infections

If your CD4 count drops below 200, you will be at risk of catching many different types of infection. Infections that ‘take advantage’ of an HIV-weakened immune system are known as opportunistic infections. However, if you stick to your HIV therapy, the likelihood of developing an opportunistic infection remains low.

The four main types of opportunistic infections are:

People with advanced HIV also have a higher risk of developing some forms of cancer, such as lymphoma (cancer of the lymph system).

Pneumonia

Pneumonia is a bacterial infection of the lungs. It can often develop as a complication of other infections, such as a cold or flu. Left untreated, pneumonia can be fatal because the infection can spread through your blood.

Pneumonia can be treated using antibiotics. There is also a vaccine that can protect you against many of the bacteria that can cause pneumonia. People living with HIV are recommended to receive annual vaccinations.

Tuberculosis (TB)

TB is another bacterial infection of the lung. Globally, it is the leading cause of death for people who are HIV positive. TB can be treated using antibiotics, but some strains of bacteria have developed resistance to this medicine, and these can be more difficult to treat.

Hepatitis

Hepatitis is a viral infection that can cause damage to your liver. This can increase your risk of developing liver cancer. There are three main types of hepatitis: hepatitis A, hepatitis B and hepatitis C.

Vaccines are available for hepatitis A and hepatitis B, but not for hepatitis C. Avoiding sharing needles and using a condom are the best ways to prevent hepatitis.

Candidiasis

Candidiasis is a fungal infection that is common in people living with HIV. It causes a thick, white coating to appear on the inside of the mouth, tongue, throat or vagina.

Though rarely serious, candidiasis can be both embarrassing and painful. It can be treated with antifungal creams.

Tell the staff at your HIV clinic if you have repeated bouts of candidiasis because it could be a sign of a low CD4 count.

Pneumocystis pneumonia (PCP)

PCP is a fungal infection of the lungs, which can be life-threatening if it is not treated promptly. Before the advances in anti-HIV medicines, PCP was the leading cause of death among those with HIV in the developed world.

Symptoms of PCP include:

  • a persistent dry cough
  • shortness of breath
  • difficulty breathing
  • in some cases, fever

Report any symptoms of PCP straight away because the condition can suddenly worsen without warning. PCP can be treated with antibiotics and, if your CD4 count drops below 200, you may be given antibiotics to prevent a PCP infection.

Cancer

People with advanced HIV have an increased risk of developing cancer. It is estimated that somebody with untreated late-stage HIV infection (AIDS) is 100 times more likely to develop cancer than somebody without the condition. However, with treatment, the risk of getting cancer is much the same as that of the general population.

The two most common cancers to affect people with HIV are lymphoma and Kaposi’s sarcoma. Lymphoma is a cancer of the lymphatic system (a network of glands that makes up part of our immune system). Kaposi’s sarcoma can cause lesions to grow on your skin, and can also affect your internal organs.

Money and financial support

If you have to stop work or work part time because of HIV, you may find it hard to cope financially. However, you may be entitled to one or more of the following types of financial support:

  • If you have a job but cannot work because of your illness, you are entitled to Statutory Sick Pay from your employer. 
  • If you do not have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance.
  • If you are aged 64 or under and need help with personal care or have walking difficulties, you may be eligible for Disability Living Allowance.

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