HIV and AIDS - Living with 

Getting support

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

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

People with HIV are seen at a specialist HIV clinic, which is usually part of a sexual health or infectious diseases clinic at your local hospital.

Find local HIV support services

Psychological support

Being diagnosed with HIV can be extremely distressing, and feelings of anxiety or depression are common.

Your healthcare team can provide you with counselling so you can fully discuss your condition and concerns.

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

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

Want to know more?

• NAM aidsmap: being diagnosed HIV positive
• Terrence Higgins Trust: myHIV
• Terrence Higgins Trust: your diagnosis

Telling your partner and former partners

If you have HIV, it's important your current sexual partner and any sexual partners you've had since becoming infected 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'll be able to advise you about who should be contacted and the best way to contact them, or they may be able to contact them on your behalf.

They'll also advise you about 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 you have HIV, but it's strongly recommended that you do.

Left untested and untreated, HIV can have devastating consequences, and eventually lead to serious illness and death.

Telling your employer

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

There's no legal obligation to tell your employer you have HIV, unless you have a frontline job in the armed forces or work in a healthcare role where you perform invasive procedures.

If you work in a healthcare role, you'll need to be monitored by your occupational health team and HIV doctor to ensure you're not putting yourself and patients at risk of infection.

The Equality Act 2010 also places restrictions on the health questions 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 essential for the job.

If you're asked a question you think isn't allowed under the Equality Act 2010, you can tell the employer or the Equality and Human Rights Commission. The GOV.UK website has more information about questions an employer can ask about health and disability.

If you're an employee with HIV, you may worry that your HIV status will become public knowledge or you'll be discriminated against if you tell your employer.

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

Want to know more?

• GOV.UK: HIV-infected healthcare workers and exposure prone procedures
• NAM aidsmap: HIV and employment
• NAM aidsmap: telling people you have HIV
• NAT: criminal prosecutions
• NAT: employment and HIV
• NAT: telling other people

Advice for pregnant women

HIV treatment is available to prevent a pregnant woman passing HIV to her child.

Without treatment, there's a one in four chance your baby will become infected with HIV. With treatment, the risk is less than 1 in 100 (<1%).

Advances in treatment mean there's no increased risk of passing the virus to your baby with a normal delivery.

But for some women, a caesarean section may still be recommended, often for 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, and staff will respect that decision.

If you have HIV, don't breastfeed your baby as the virus can be transmitted through breast milk.

Conception

If you or your partner has HIV, options may be available that allow you to conceive a child safely. You should ask your HIV doctor for advice.

If you have HIV and become pregnant, contact your HIV clinic.

This is important because:

• some HIV treatments can be harmful to your unborn baby, so your treatment plan will need to be reviewed
• additional medicines may be needed to prevent your baby contracting HIV

Want to know more?

• HIV i-Base: HIV, pregnancy and women's health
• NAM aidsmap: HIV and pregnancy tool
• NAM aidsmap: preventing mother-to-baby transmission

Infection risk

You'll be at risk of developing infections you wouldn't normally be at risk of if your immune system has been damaged by the HIV virus.

These opportunistic infections, as they're called, happen when you have a very weak immune system.

But if you take your HIV treatment, the likelihood of developing these 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)
• parasitic 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 cancer of the lymphatic system (lymphoma).

Pneumonia

Bacterial pneumonia can develop as a complication of other infections, such as flu. It can be treated with antibiotics. Left untreated, pneumonia can be fatal.

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

It's also recommended they have a pneumoccocal vaccination, which protects against a serious chest infection called pneumococcal pneumonia.

Pneumocystis pneumonia (PCP)

Pneumocystis pneumonia (PCP) is a fungal infection of the lungs, which can be life threatening if not treated promptly.

Before advances in HIV treatment, 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
• fever (in some cases)

Report any symptoms of PCP straight away as the condition can suddenly worsen without warning.

PCP can be treated with antibiotics. If your CD4 count drops below 200, you may be given antibiotics to take every day until your CD4 count rises above 200.

Tuberculosis (TB)

Tuberculosis (TB) is another bacterial infection. Globally, it's one of the leading causes of death for people who are HIV positive.

The bacteria responsible for causing TB can sometimes pass from one person to another through the air. But many people who have TB aren't infectious.

TB can be treated using antibiotics, but some strains of bacteria have developed antibiotic resistance and these can be more difficult to treat.

Candidiasis (thrush)

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

Candidiasis is rarely serious, but it can be both embarrassing and painful. It can be treated with antifungal creams and tablets.

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

Cancer

People with advanced HIV have an increased risk of developing some types of cancer.

It's estimated someone with untreated late-stage HIV infection is 100 times more likely to develop certain cancers compared with someone without the condition.

The two most common cancers to affect people with HIV are:

• lymphoma – cancer of the lymphatic system, a network of glands that makes up part of our immune system
• Kaposi's sarcoma – this causes 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, giving up is also important in reducing this risk.

Money

If you have to stop work or work part time because of HIV, you may find it difficult to cope financially.

But you may be entitled to one or more of the following types of financial support:

• Statutory Sick Pay (SSP) – if you have a job but can't work because of your illness, you're entitled to SSP from your employer
• Employment and Support Allowance (ESA) – if you don't have a job and can't work because of your illness, you may be entitled to ESA
• Personal Independence Payments (PIP) – you may be eligible for these if you're 64 and under and need help with personal care or have walking difficulties

Want to know more?

• Care and support: benefits for carers and benefits for the person you care for
• GOV.UK: benefits and financial support
• NAT: benefits and financial issues