HIV and AIDS - Living with 

Living with HIV 

How people cope with being diagnosed with HIV, as well as with treatment, varies from person to person.

By properly managing your condition – taking your medication correctly and avoiding illness – you will be able to live as normal a life as possible.

Other issues to consider include getting psychological support, telling people about your HIV, pregnancy and financial support.

Your medication

HIV treatment only works if you take your pills on time, every time. Missing even a few doses will increase the risk of your treatment not working. It can be helpful to develop a daily routine around taking your medication, so that you do not forget to take it.

Many of the medicines used to treat HIV can react in unpredictable ways if you take other types of medicines. These include herbal remedies such as St John's Wort, recreational drugs such as cocaine, and over-the-counter medicines.

Always check with clinic staff or your GP before taking any other medicines.

Your health

In addition to taking HIV medication, there are many things you can do to improve your general health and reduce your risk of falling ill.

These include:

Reviewing your treatment

Because HIV is a long-term condition, you will be in regular contact with your healthcare team, who will review your treatment on an ongoing basis.

A good relationship with the team means that you can easily discuss your symptoms or concerns. The more the team knows, the more they can help you.

Services, including support organisations, may work together to provide specialist care and emotional support. Find local HIV support services.

Preventing infection

If you have HIV, you should take extra precautions to prevent exposure to other infections.

Everyone with a long-term condition such as HIV is encouraged to get a flu jab each autumn to protect against seasonal flu (influenza).

It is also recommended that they get a pneumoccocal vaccination every five years. This is an injection that protects against a serious chest infection called pneumococcal pneumonia.

Want to know more?

Psychological impact of HIV hide

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.

Want to know more?

back to top

Telling people about your HIV show

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, or may be able to contact them on your behalf.

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 have a frontline job in the armed forces or you work in a healthcare role where you perform invasive procedures (as you will need to be monitored by your occupational health team and HIV doctor to ensure you are not putting your patients at risk of infection).

The Equality Act 2010 also places restrictions on the health questions that employers can ask during a job application process. Employers are allowed to ask health questions only after an offer of employment has been made, to help them decide whether you can carry out tasks that are essential for the job.

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.

Want to know more?

back to top

Pregnancy show

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, there may be options available that will allow you to conceive a child without putting either of you at risk of infection. You should ask your HIV doctor for advice.

Want to know more?

back to top

Opportunistic infections  show

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 flu 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.

back to top

Money and financial support show

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 (DLA) or Personal Independence Payments (PIP).

Want to know more?

back to top

Page last reviewed: 28/08/2012

Next review due: 28/08/2014

Ratings

How helpful is this page?

Average rating

Based on 26 ratings

All ratings

Add your rating

Comments

The 2 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Hopeless111 said on 06 November 2013

Although the list is not definitive HIV does not appear at all in any of the NHS recent documents about living with long term conditions. Its good to see it here, but would be even better if it was not overlooked when it should be up there with diabetes, COPD, and depression.

Report this content as offensive or unsuitable

prometheus1972 said on 25 March 2012

The only mortgage type you have to declare your HIV status is an endowment mortgage, because this is effectively a insurance policy. Other mortgages are dependent on the lender risking the investment against asset value of the property and not your health. Although usually offered life insurance at the same time as taking a mortgage you are not normally obliged to take it.

Report this content as offensive or unsuitable

How will HIV affect your life?

  • You will not be able to donate blood or organs.
  • You will not be able to join the armed forces.
  • You will need to declare your HIV status to any company from whom you wish to purchase a mortgage, life insurance or travel insurance, in the same way as anyone with any other long-term medical condition.
  • There are some countries that you will not be able to visit.

HIV and pregnancy

Sarah has HIV. She describes her pregnancy and the steps she had to take to ensure she’d have a healthy baby. An expert explains what HIV is and how to avoid passing it on to your unborn child.

Media last reviewed: 20/08/2013

Next review due: 20/08/2015

A positive HIV test

Find out how to cope if you test positive for HIV and where to go for support