What is living with HIV?

back to top Introduction

Whether you’ve just been diagnosed with HIV or have a friend or relative that is HIV positive, there may be lots of questions about HIV that you want to find the answers to.

What is it like living with HIV? Is there treatment available for people living with HIV? What is it like to grow older with HIV?

If you are living with HIV you may find it helpful to stay well informed about HIV and related issues. It may help to ensure you live a healthier and longer life. If your friend or relative is HIV positive, learning more about HIV may help you understand their situation and can help if they turn to you for support.

back to top How do you cope with an HIV positive test result?

“The important thing to remember is millions of people live full and rewarding lives with HIV. ”

There are some things that you can only understand when they happen to you. Testing positive for HIV is undoubtedly one of them.

Reactions to an HIV positive test result are different for everyone and over time, people find a way of dealing with the result in a way that suits them.

The important thing to remember is millions of people live full and rewarding lives with HIV.

Our learning you are HIV positive and emotional needs and support pages have more information, including how to deal with an HIV positive test result and who to tell.

back to top So what is HIV? And what is AIDS?

HIV (human immunodeficiency virus) is a virus that gradually attacks a person’s immune system cells. As HIV progressively damages these cells, the body becomes more vulnerable to infections, which it will have difficulty in fighting off. It is at the point of very advanced HIV infection that a person is said to have AIDS.

A person is diagnosed with AIDS (acquired immune deficiency syndrome) when they develop an AIDS related condition or symptom, called an opportunistic infection, or an AIDS related cancer. The infections are called ‘opportunistic’ because they take advantage of the opportunity offered by a weakened immune system.

It can be years before HIV has damaged the immune system enough for AIDS to develop.

So in short, HIV is the virus that can lead to the medical condition called AIDS.

back to top Can HIV be cured?

There is no cure for HIV infection or AIDS and there is still no vaccine for HIV or AIDS. HIV treatment, however, can suppress the virus and delay illness for many years.

back to top What treatment and care is available?

Antiretroviral therapy

The only way to effectively control the level of HIV in the body is by taking antiretroviral therapy. The treatment consists of drugs (antiretrovirals/ARVs) that have to be taken every day for the rest of a person’s life. It can take several years before HIV has damaged the immune system to the extent that treatment is needed; most people live with the virus for a number of years before they have to start taking antiretroviral therapy.

The drugs work by reducing the amount of virus in the body to very low levels, allowing the immune system to recover its strength. There are five groups of antiretroviral drugs; each attacks HIV in a different way. Taking two or more drugs from different groups reduces the risk of HIV becoming resistant to the treatment.

Treatment for opportunistic infections

If antiretroviral therapy is unavailable or is not working properly, a person living with HIV may develop opportunistic infections that will need to be treated. Common examples are tuberculosis, pneumonia and candidiasis.

Some opportunistic infections are easier to treat than others. Symptoms such as candidiasis of the mouth or herpes simplex can be managed effectively through doctors or home-based care settings. However, opportunistic infections such as toxoplasmosis and cytomegalovirus infection can only be diagnosed and treated effectively in places with advanced medical resources.

Even in the best-resourced areas, treatment for opportunistic infections remains essential, especially for those who have yet to start, or have only recently started, antiretroviral therapy. For young children and people with weak immune systems, drugs such as cotrimoxazole may be recommended to prevent opportunistic infections occurring.

You can read more about these infections in our HIV related opportunistic infections page.

Nutrition and alternative and complementary treatment

HIV and nutrition are intimately linked. HIV infection can lead to malnutrition, while poor diet can in turn speed the disease’s progress. It is important, therefore, that a person living with HIV receives help and advice about the best way to maintain a good diet.

In the absence of antiretroviral treatment, many people seek other ways to delay the onset of AIDS or to treat opportunistic infections. Alternative and complementary medicine is quite popular among people living with HIV. Many HIV positive people say they feel better after using such therapies, and it is likely that some of these treatments are indeed beneficial, although unproven according to conventional Western medicine.

Some people already taking antiretroviral treatment may also seek complementary therapies to relieve treatment side effects, stress, or improve general health and well-being.

Although some complementary treatments may be helpful for treating minor ailments, others are likely to do more harm than good. Adverse effects may be due to toxicity, injury or interactions with other medications. Doctors need to be aware of all forms of treatment their patients are receiving.

back to top What can someone living with HIV do to stay healthy for longer?

There are many things you can do to try and stay healthy after you have been diagnosed with HIV:

• Try and stay in contact with a doctor or some other health professional. It is important to keep appointments and to follow advice from doctors.
• It is important to take antiretroviral treatment exactly as prescribed. Severe reactions to the treatment should be reported to a doctor as soon as possible to explore the possibility of switching drugs.
• Due to the weakened immune system, STDs are often more severe among people living with HIV. Safer sex should be practised to reduce the chance of STD transmission and reinfection with other strains of HIV.
• Healthy eating, regular exercise and getting enough sleep and relaxation time can all improve a person’s well-being.
• You could think about joining a support group. As well as providing a chance to meet other people living with HIV, these groups also offer advice on all aspects of coping with HIV. If you would like to find US or UK-based support groups in your area visit our Help and advice for HIV and AIDS in America page or Help and advice for HIV and AIDS in the UK page.

back to top End of life care

Sometimes, for a variety of reasons, antiretroviral drugs stop working, or are unavailable. In these cases, as AIDS progresses, end of life care becomes necessary.

End of life care aims to provide comfort and support for people who are terminally ill and, ultimately, to allow them to die with dignity. This can involve controlling pain, treating symptoms, relieving psychological or spiritual anguish, and supporting families and caregivers.

In many resource-poor countries, the health infrastructure is inadequate to provide hospital care for everyone approaching end of life. Even when hospital care is available this may not be what is wanted. Training can enable family and community caregivers to provide medications and other forms of home based care, with health workers making occasional home visits as required.

It is often believed that it is inappropriate to talk about the fact that somebody is going to die, and that mentioning death will in some way hasten it. However, for those who wish to discuss death, open discussion can help people to feel their concerns are heard, their wishes followed, and that they are not alone.

back to top How can you make sure you don't pass on HIV to other people?

There are precautions that you can take to reduce the risk of infecting others with HIV through the three main transmission routes.

Sexual transmission

You can eliminate or reduce their risk of transmitting HIV during sex by:

• Abstaining from sex or delay first sex
• Being faithful to one partner or have fewer partners
• Using male or female condoms consistently and correctly when having sex

Although it can be a difficult process, it is helpful for people living with HIV to tell their sexual partners so that both take steps to reduce the risk of transmission.

Transmission through blood

People living with HIV who inject drugs and share equipment risk transmitting the virus to other injecting drug users. Methadone maintenance and other drug treatment programmes are effective ways to help people eliminate this risk by giving up injecting drugs altogether. However, for many people it is very difficult to give up a drug addiction.

Needle exchange programmes are effective at reducing HIV transmission by distributing clean needles and safely disposing of used ones for people unable to give up injecting drugs. They also offer related services such as referrals to drug treatment centres and HIV counselling.

Many countries do not support needle exchange programmes due to a lack of resources or political opposition. Finding a local HIV service organisation or consulting a doctor might be the best option in this situation.

If you are living with HIV you should not donate blood, plasma or organs, due to the high risk of HIV transmission.

Mother-to-child transmission

Treatment to reduce the risk of HIV transmission to a baby during pregnancy, childbirth or breastfeeding is available for HIV positive pregnant women in many countries. It is important that all pregnant women living with HIV seek information from a doctor or health professional in the early stages of pregnancy.

We have more information about HIV and pregnancy.

back to top How do you tell your children they are HIV positive?

If you have a child who is HIV positive, deciding when to tell them about their status and how to tell them, are decisions that most people will find difficult. There is no 'right time'; everyone's situation is different.

It is advisable to speak to a counsellor or health professional about your decision. It can often help to hear how other people dealt with a similar situation.

The following quotes are taken from our personal stories of young people living with HIV page:

“My parents couldn't believe that I handled the situation so well they feared the worst, that I would be hysterical but I told them that I guess I always knew I just never really truly accepted.” Hopeful

“Parents if your reading this please don't wait to long to tell your kids, if at all. Teach them to handle it. Because it was the hardest thing in my life learning how to deal with people who had a problem with it.” Ruthy

“For people who were born with it can you remember the first time being told? Not me I feel I was born knowing this.” J.O

back to top Stories from people living with HIV

Reading other people’s stories can often make you realise you are not alone in your situation. They can also help you understand how other people cope with their positive status or how people look out for a friend or relative who is living with HIV.

“I am not in a support group at the moment but I would love to be in one, meet others like me and learn from them. This is not the end of the world, this is not a reason to give up on our hopes and dreams. We are in control, not the disease. I had never been so comfortable with myself before, as I am right now, at least for that I am grateful.”

“It’s kinda difficult to live with someone who is HIV positive because you never know whats going on their minds sometimes. The best thing I do is to shower her with love and assure her that everything is gonna be alright.”

Read more stories from people living with HIV and AIDS.

back to top Where to get further help and support

AVERT has a general Help and Advice page, as well as Help and advice for HIV and AIDS in America, and Help and advice for HIV and AIDS in the UK.

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