Everything you need to know about living well with HIV
You may living with HIV or wondering, what is HIV? Here, we aim to answer this question by explaining HIV symptoms, HIV treatments, what causes HIV, and what support is available for people with the condition.
Anything you read here is not a substitute for professional medical advice. If you are concerned that you may have HIV symptoms, speak to your GP.
HIV stands for human immunodeficiency virus. It affects the body’s immune system, which is essential for fighting off infections. It is a lifelong condition and there is no cure for HIV, but HIV treatment is highly effective - people with HIV can now live just as long as those without the virus.
First identified in the 1980s as a ‘new’ disease, HIV is now a worldwide epidemic, with over 70 million people having been infected since the start.
Without diagnosis and treatment, HIV damages the body’s immune system to the point where it can no longer defend itself against infection. This is called later-stage HIV or AIDS. People with HIV do not always develop AIDS, and it is quite rare now to develop AIDS or an AIDS defining illness in the UK due to effective HIV treatments. Some people who were diagnosed in the earlier days of the virus, in the 1990s, are surviving HIV but may have long term health conditions.
For more information on HIV, visit the NAT website.
HIV is a contagious virus. It attaches itself to special cells in the body called T-Helper cells and takes over the cell, producing more HIV cells. T-Helper cells are essential to the function of our immune system, as they activate other cells to fight against infected cells and to produce antibodies. With HIV, the amount of T-Helper cells in the body diminishes, and can become so low that the immune system cannot function, which puts the person affected at risk of contracting a variety of other illnesses and viruses, or developing AIDS. However, the treatment for HIV is extremely effective and can halt this process, ensuring a person lives a healthy, long life. Read more about the HIV lifecycle.
HIV is passed from a person with the condition, to another person, who then develops the condition. The virus is passed on through bodily fluid such as that from the vagina and anus, semen, blood and breast milk. It is most commonly passed on through having unprotected sex, i.e. sex without the use of a condom, but it is also possible to catch HIV through sharing the same needle as someone with the virus, i.e. when injecting intravenous, illegal drugs. It is also possible to contract HIV through a blood transfusion, although this is rare in the UK due to stringent pre-test processes. It is also possible for a mother with HIV to pass the condition to her baby.
For more information about how HIV infects the body, visit the Avert website.
Many people are unaware that there are actually two types of HIV, known as HIV-1 and HIV-2. This article refers mostly to HIV-1, which is the most common of the two HIV types and the cause of the worldwide pandemic. Most people in the UK are diagnosed with HIV-1. The main difference between the two is that HIV-2 develops even more slowly than HIV-1. HIV-2 occurs mostly in people from some parts of Africa. The treatment for HIV-1 usually works for HIV-2 as well, but the latter type of HIV is less well understood.
For a further HIV explanation, including information on the types of HIV and subtypes within these, visit the Avert website.
Lots of people all over the world are living with HIV and may not even realise it. HIV causes quite mild symptoms which often only occur during the initial phase of the virus, straight after contraction. These symptoms may go away after a few weeks and the person may have no idea they have contracted HIV. Many people live symptom-free for a long time, up to 10 years, before they have any further HIV symptoms, which may begin to occur because the immune system is damaged beyond repair. Therefore, the only way to know you do not have HIV, is to be tested for the virus.
Early symptoms of HIV may include:
• Feeling unwell or as though you have the flu
• Having a higher than normal temperature
• Having a sore throat or swollen glands
• Experiencing a mild rash on the body, often on the chest area
• Feeling tired or having muscle and joint pain
Later symptoms of HIV, which are referred to as AIDS or having an AIDS defining illness, when the virus has been in the body for many years, may include:
• Frequent infections, ranging from mild to more severe and caused by poor immunity
• Serious illnesses e.g. sarcoma or pneumonia
• Unexplained weight loss
• Diarrhoea and stomach pains
• Night sweats
• Exhaustion and fatigue
If you are experiencing any of these symptoms, it is important not to panic. They are also symptoms of many other health conditions and mild illnesses, but you should visit your GP to have these checked out and obtain a diagnosis.
The Terrence Higgins Trust provide information on symptoms of HIV.
Early HIV symptoms may be very mild and last for a short amount of time, whilst the virus initially infects the body. The second stage of the virus usually presents no symptoms at all, so many people do not even know they have the condition unless they have a HIV test.
If you think you may be at risk of having contracted HIV, for example, if you have had unprotected sex with another person, or shared needles with another person, you are able to access a HIV test from:
HIV can only be detected from a blood sample, so you may have a full blood sample taken (blood test) or have a finger prick test.
Some people also choose to have a HIV test at the start of a new relationship, or have them regularly each year if they have multiple sexual partners.
Pregnant women are given the option of having a blood test for HIV, to check if they have the virus, and are at risk of passing it to their baby. If the mother finds she is HIV positive (she has the virus), then HIV treatment during pregnancy can reduce the risk of passing it on to the baby. For more information on this, visit the NHS pregnancy and baby guide.
The Terrence Higgins Trust provides lots of information about testing for HIV and what happens after a confirmed HIV diagnosis, which is when blood tests confirm you have the virus.
There is currently no cure for HIV, but treatment is now extremely effective. People with HIV need to take medication throughout their lives, to keep the levels of HIV in the body as low as possible. Many people get to a stage where the viral load is so low that it is not detectable. They still have to continue their medication regime though, which may just consist of taking tablets twice a day. People with a HIV diagnosis are urged to start treatment straight away.
Medication is designed to stop the virus replicating itself within the body and are called antiretroviral drugs. Not everyone with HIV takes the same medication as there are lots of types of HIV drugs and most people are recommended to undertake combination therapy (up to three types of drug). Your doctor will find the most appropriate combination for you. Some people are resistant to certain drugs, or may develop a resistance over time, which means the drugs stop working for them. There are plenty of other drug options available though, which your doctor may prescribe as alternatives. For more information about each type of medication used in HIV treatment, visit the i-base guide to ARVs.
Medications used as HIV treatments do cause mild side effects and if these are significant, you may wish to discuss with your doctor about trying a different combination.
It is essential for someone undergoing treatment for HIV to take the correct dose at the correct time – and to never miss a dose. This ensures the person’s viral load stays low. A person who is HIV positive and undergoing treatment for HIV will have their viral load monitored regularly to ensure their medication is working effectively. The Avert website explains more about monitoring and switching HIV medications.
HIV can be passed on by having unprotected sex with an infected person. Many people do not know they are HIV positive, and therefore, they may pass the virus on without realising it. Practicing safe sex using a condom is the main way to ensure you do not contract HIV or pass it to another person if you have the virus. If you use needles to inject drugs, not sharing needles will also help reduce your risk.
However, it is important to note that people who are taking HIV treatment effectively can ensure their viral load is so low that they are unable to pass the infection on to anybody else. The less the virus is active within a person’s body, the less likely they are to pass HIV on to other people, for example, their sexual partners. The charity Terrence Higgins Trust has launched a campaign called ‘Can’t pass it on’ to promote this message and reduce some of the stigma surrounding HIV.
If you are worried you may have contracted HIV very recently, you may be able to take a course of HIV treatment called post-exposure prophylaxis (PEP). This is an emergency measure to be used, for example, if you have unprotected sex with someone who has HIV. The course of drugs may be able to stop HIV spreading once the virus is in your body, so that you do not contract the virus. There are strict rules about who is entitled to receive a course of PEP though, and only people with a high risk of having been passed the virus are able to obtain it. PEP is usually only available through sexual health clinics. Terrence Higgins Trust provides lots of information about PEP.
Receiving a diagnosis of HIV can be difficult to take in. It is important that you get the right information after your diagnosis and ensure you are provided with a HIV explanation from your clinicians. You are likely to have lots of questions, worries and concerns. In this section, we explore some of the challenges you may experience if you have HIV, ways to live healthily, and the impact HIV may have on your life. It is important to remember that HIV is not a death sentence – it is a treatable condition and you are likely to be able to live a long, healthy life if you manage your HIV treatment well.
You may be wondering if and when you should share your HIV positive diagnosis. The avert website provides advice about telling other people about your condition.
It is important for you to practice safe sex to avoid passing on the virus. For more information, visit the British Association for Sexual Health and HIV website.
Obtaining an affordable mortgage or loan can be difficult for someone with HIV. The Aidsmap website provides lots of information about personal finance that you may find useful.
Living with a long term condition like HIV can create challenges to your emotional wellbeing and mental health, due to extra stress and anxiety. For more information on how to improve your sense of wellbeing and get mental health support, visit the Aidsmap website.
It is important to remember that you are not alone in your HIV diagnosis. There are around 90,000 people living with HIV in the UK, and attitudes about the condition have changed drastically over the years. With increasing knowledge and treatment success, the stigma that surrounds HIV is slowly beginning to lift. Everyone will experience HIV differently. HIV will almost certainly change your life, but there are ways to live well with the condition and live as long and healthily as others who do not have HIV.
Some people find it helps to hear stories of others who are living with HIV. HIV Scotland provides a selection of personal stories you may find interesting.
At Healthcare Pro, we are experts in daily living aids, which are products designed to help if healthcare conditions are creating challenges in your daily life. We have a selection of HIV aids for daily living that may help a person with HIV to manage their medication and remember to take the correct dose at the correct time.
PLEASE NOTE: our Expert Advice Service can only give advice about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.
Eating a healthy HIV diet is important and will help reduce the risk of developing other health conditions. The Food Chain website provides lots of information on HIV and nutrition.
Some people choose to take HIV supplements, such as vitamins and minerals in tablet or liquid form, to boost immunity. For example, B vitamins, magnesium, potassium and zinc. There are some herbal HIV supplements that are dangerous as they may interfere with medication, for example, taking garlic tablets. For more information about HIV supplements, visit the Aidsmap website.
There is little evidence to confirm that these actually have any effect on the body, and we recommend you discuss with your GP or HIV clinician before embarking on a programme of supplements for HIV.
If you have HIV, undertaking regular exercise will help keep your body strong and healthy and reduce the risk of you developing other long-term health conditions such as heart disease. Exercise does not affect your HIV – it will not make it worse or better, but it will make you healthier and can improve mood and wellbeing.
For more information on developing an exercise programme, visit the Aidsmap website.
There are some restrictions on employment if you have HIV, for example, you will not be permitted to join the armed forces. Restrictions on practicing healthcare have recently been changed, so that people with HIV are now permitted to work in healthcare (doctors, nurses, dentists) etc, but must have a zero viral load and agree to regular monitoring of their condition.
Otherwise though, people with HIV are able to work and most people find it has little to no impact on their working life. Some people choose to tell their employer that they are HIV positive and others do not – you do not legally have to do this.
For more advice about everyday concerns about employment, visit the NAT website.
We hope this guide to HIV has answered some of your questions about the condition, whether you are HIV positive yourself, know someone who is, or perhaps are just curious about what it is. If you have concerns about your health or are worried you may have contracted HIV, speak to your GP or visit a sexual health clinic. Early diagnosis and treatment means you are likely to live a long and healthy life, not limited by the condition.
If you still have questions or need further information, there is a wealth of HIV support online. There are many charities providing help for HIV. Many people also benefit from speaking to others about their experiences, and below, we list some forums where you can go for HIV help and discussion.
myHIV forum – the free forum from Terrence Higgins Trust, with nearly 4000 members in a network of HIV-positive people
The Tribe HIV/AIDS – an online community providing peer to peer support for people living with HIV or AIDS, from people with a new diagnosis or those who have been living with the condition since the earlier days of the virus
HIV/AIDS Education and Support – a Facebook group with members from across the world who share experiences, stories and advice
Avert – a charity educating people about HIV, providing online information about the condition and working across the globe
HIV Prevention England – a programme of prevention work for those most at risk of contracting HIV in England, which focusses on educating people with local events and national awareness campaigns
i-base – an activist group providing publications about living with HIV, with online and telephone treatment advice
NAT (National Aids Trust) – a charity campaigning for people with HIV, with a guide for those living with HIV, training and teaching materials and real life stories
NHS – official medical information about all aspects of HIV and related health matters including safe sex and healthy living
Positively UK – a charity providing information and support to people with HIV, including peer mentoring services, training opportunities and project work
Sexwise – honest and open information about all sex-related matters such as HIV and other sexually transmitted infections, pregnancy, safe sex etc, including a helpline
Terrence Higgins Trust – a charity named after one of the first people in the UK to die from AIDS, providing information on all aspects of HIV, AIDS, sexually transmitted infections and how to have safer sex, along with an online forum, counselling and advice services
Test.hiv – the UK’s official, commissioned provider of HIV home testing kits which are available to order online (free in certain areas)
World Health Organization – official information on HIV and AIDS across the world, including facts, statistics, policies and guidelines
Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of HIV as straightforward as possible.
– Acquired Immunodeficiency Syndrome, the final stage of HIV when immunity is extremely damaged, resulting in the diagnosis of other serious health conditions and in many cases ending in fatality
AIDS defining illness
– serious medical conditions such as cancer, that develop as a result of long term and untreated HIV, due to a damaged immune system
– medication that treats HIV by blocking the actions of the virus and ensuring it cannot continue to grow
– a health condition, virus or disease that spreads from person to person
– the process and parts of the body that combat infection from the outside world, which includes cells, organs and tissues
– a lung infection caused by virus or bacteria
– cancerous tumours in soft tissues
– an important type of cell in the body that activates other cells in the immune system, also known as CD4 cells, which HIV takes control of in an infected person, causing damage to the immune system
– the measure of a virus in the body e.g. the level of HIV virus present