HIV and AIDS - Living with HIV
- Introduction
- Symptoms of HIV
- Causes of HIV
- HIV testing
- Treating HIV
- Preventing HIV
- Living with HIV
- 'Many HIV-positive women assume they'll pass on HIV to their baby, but that's not the case these days'
- 'If it wasn’t for HIV, I wouldn’t be where I am today.'
- 'Having HIV is not the end of the world'
- 'Things have moved on a lot since I was diagnosed with HIV'
- 'It can happen to anyone. It's not just a gay disease'
- complications
- questionstoaskpg
Psychological impact of HIV
Being diagnosed with HIV can be extremely 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?
- Terrence Higgins Trust: My HIV
- Terrence Higgins Trust: Your diagnosis
- namlife: Being diagnosed HIV positive
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.
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. They will also advise you on disclosing your status to future partners and how you can reduce the risk of transmitting the virus to someone else.
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?
- NAT: Criminal prosecutions
- NAT: Telling other people
- NAT: Employment & HIV
- namlife: Practicalities of telling somebody
- namlife: HIV and employment
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 100.
Advances in treatment mean that a normal delivery is now recommended for women who have an undetectable viral count and whose HIV is well managed. For some women, a caesarean section may still be recommended, and may also be indicated for other reasons not related to your HIV.
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, 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?
- HIV i-Base: HIV, pregnancy and women’s health
- namlife: Mother-to-baby transmission of HIV
- nam: HIV & Pregnancy tool
Opportunistic infections
If your CD4 count drops below 200, you will be at risk of developing 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 is low.
The four main types of opportunistic infections are:
- bacterial infections, such as pneumonia or tuberculosis (TB)
- fungal infections, such as oral thrush and pneumocystis pneumonia (PCP)
- parasitical infections, such as toxoplasmosis
- viral infections, such as shingles (herpes zoster)
People with advanced HIV also have a higher risk of developing some forms of cancer, such as lymphoma (cancer of the lymph system).
Pneumonia
Bacterial Pneumonia is more common in people with HIV, but also occurs in people without HIV, particularly those with chronic respitory conditions. It can develop as a complication of other infections, such as 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 one of the leading causes 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.
Candidiasis (thrush)
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 some cancers. It is estimated that somebody with untreated late-stage HIV infection (AIDS) is 100 times more likely to develop certain cancer than somebody without the condition.
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.
HIV treatment is important in reducing your risk of cancer and long-term conditions, such as cardiovascular and respiratory disease. If you smoke, stopping smoking is also important in reducing this risk.
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 (DLA) or Personal Independence Payments (PIP).
Want to know more?
- NAT: Benefits and financial issues
- Carers Direct: Benefits for carers and Benefits for the person you care for
- GOV.UK: Benefits and financial support
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