Living with HIV
Advances in HIV treatment mean that, in the UK, most people living with HIV can live as long as anyone else. Whether you have just been diagnosed with HIV, or have been living with HIV for a long-time, this section offers advice on how to live well and healthily with HIV.
About HIV
HIV is a long-term health condition that can be managed well with treatment. HIV stands for Human Immunodeficiency Virus. It is a virus which attacks your body’s immune system. If HIV has been in your body for a long time, without treatment, it can make you more likely to get infections that can develop into serious illnesses.
HIV treatments are very effective. The earlier you are diagnosed and start treatment, the more effective the drugs are in keeping you healthy. HIV treatment works to:
- Reduce the amount of HIV in your body
- Reverse the damage to your immune system
- Prevents further damage to your immune system
- Stops HIV from being passed on to other people during sex.
Symptoms and stages of HIV
Up to six weeks after getting HIV, most people experience short illness with flu-like symptoms. Often these symptoms are so mild that they go unnoticed or are mistaken for the flu. This is called a seroconversion illness.
The most common symptoms people experience in the early stages of an HIV infection are:
- Fever (raised temperature)
- Sore throat
- Swollen glands
- Aches and pains in your joints and muscles
- Rash over the body
These seroconversion symptoms are a sign that your immune system is putting up a fight against the virus. These symptoms can all be caused by conditions other than HIV, and do not mean you have the virus.
In this initial stage of an HIV infection, HIV multiplies rapidly within your body. In this stage of the illness, the levels of HIV are very high in your body. Due to these high levels of HIV in your blood, the risk of passing on HIV to others is higher than at other times. This stage of HIV is known as acute HIV infection
The next stage is known as asymptomatic HIV infection. This is because most people do not have any obvious symptoms or health problems. During this stage, HIV is still active in your body and doing damage to your immune system. This stage can last for several years without people noticing serious health problems. This means that many people are unaware that they have HIV during this period and there is a high risk of them passing HIV on to others.
Eventually, if HIV is left untreated, the damage it does to the immune system will start to cause more serious health problems. This stage is known as symptomatic HIV infection. People begin to experience symptoms like night sweats, long-lasting diarrhoea, thrush in the mouth, weight loss, fatigue, or pneumonia. Many people only get tested, diagnosed and treated for HIV at this stage. The good news is that, even at this stage, HIV treatment is effective and can strengthen the immune system, preventing more serious illnesses.
If HIV is left untreated, it gets progressively worse and can cause severe damage to the immune system. When the immune system is significantly weakened, the body cannot fight off infections and illnesses, and people can get serious ill. This stage used to be referred to as AIDS (which stands for Acquired Immune Deficiency Syndrome). These days, doctors and nurses are more likely to talk about ‘advanced HIV’ or ‘late-stage HIV’ than AIDS.
Dealing with a recent HIV diagnosis
Getting an HIV diagnosis can throw up lots of emotions. You might be feeling shocked, angry, overwhelmed, worried, or just numb. The important thing is not to panic.
In the weeks after you get a diagnosis, the nurses and doctors at your HIV clinic will tell you lots of information. We know that it can be difficult to take everything in at this time. If you can only focus on a few key facts, here’s what we think it is useful to remember:
- An HIV diagnosis does not mean you are going to die. HIV can be managed effectively with treatment, and you can live a long, healthy life.
- Starting your treatment as soon as possible, and staying on your treatment, can help you achieve an undetectable viral load this means you can have sex without worrying that you will pass HIV on to your partners. However, it can take up to six months on treatment before the levels of HIV in your blood become undetectable.
- There is no shame in having HIV.
When you’re ready to take in more information, the information on this website (and the useful links at the bottom of this page) should answer all your questions. But our Peer Support team, are here to support you, let you talk through your feelings, and help you process your diagnosis and what it means for you.
Living well with HIV
If you are living with HIV, it is important to think about how you can stay healthy. In many ways, the advice for people living with HIV is very similar to the healthy living advice offered to everyone else:
- Having a healthy, balanced diet helps keep your immune system strong and fighting infections.
- People living with HIV are thought to be at higher risk of cardiovascular disease. Your cholesterol levels will be monitored during your HIV clinic appointments. Take action if your cholesterol levels are high. If you are aged 40+ you will probably be encouraged to start statins to help reduce the risk of cardiovascular disease.
- Regular exercise can boost your immune system and improve your physical and mental wellbeing.
- Some HIV medications can interact with recreational drugs in dangerous ways. It is worth being honest with your HIV doctor or nurse about your recreational drug use, so they can help with harm reduction.
- The single most important thing you can do is stop smoking. Smoking significantly increases the risks of heart attacks (some studies suggest the risk is doubled) for people living with HIV.
Sharing your status
There is no shame in having HIV. Being open with friends and family about your HIV status can help you feel less isolated and more in control. But you are under no obligation to tell people about your HIV status, and we recommend only doing it when you are ready and on your own terms.
When you are ready to tell someone about your HIV status, we recommend:
- Be prepared: think about what you want to say and how to say it. You might want to have some information with you about HIV, so that they can learn more and have their questions answered.
- Stay safe: find the right time and place to tell them. It might help to have a friend with you (or available to call afterwards) as support.
Support
Our Peer Support team can help you think through who to tell and help you prepare to share your HIV status with them.
Your HIV clinic will not share your HIV status with your GP unless you give them permission to do so. However, it is probably useful for your GP and your dentist to know about your HIV status, and we would recommend you tell them.
In most cases, you do not need to tell your employer about your HIV status. If you do choose to tell them, they are legally required to keep this information confidential and not share it with anyone. If you experience discrimination or harassment at work because of your HIV status, you are protected by law.
Useful resources
The Terrence Higgins Trust offer lots of advice about living with HIV:
HIV | Terrence Higgins Trust
The aidsmap website offers good summaries of the latest research and advice about HIV:
About HIV | aidsmap
Sophia Forum offers specialist advice and advocacy for women living with HIV:
Sophia Forum – We are a Research, Policy and Advocacy organisation with participatory involvement
CHIVA provide information and support for children and young people living with HIV:
Chiva | Home