Finding out

You are probably reading this because you or someone you know has recently been diagnosed with HIV. Everyone responds differently to the news, and there is no right or wrong way to handle it.

Taking everything in when you first hear about the diagnosis can be hard. You may need help to get information and answers to questions you have. Some people want to know everything immediately, others either feel uncomfortable doing this or want to learn the specifics gradually.

Remember that due to research and improved medication, living with HIV has changed a lot in the last ten to twenty years. People from all walks of life are living with HIV and enjoying full and active lives. Give yourself time to get used to the idea that having HIV will change your life in significant ways, but you will learn and have support to adapt to the changes over time.

What being diagnosed with HIV means

HIV stands for Human Immunodeficiency Virus. Being told you have HIV means your body has come into contact with HIV and you have contracted the virus.

Even though HIV infection is serious and there is currently no cure, there are many treatment options available to you that will enable you to live a long and healthy life. Combination-drug treatments mean you can be in control
of HIV, not the other way around.

HIV belongs to a group of viruses called retroviruses. These work by invading the genetic material of cells within your body. Normally, the body’s immune system would fight off such a virus, but HIV stops this by infecting CD4 cells (also known as T-cells). The virus can live in the body for years without causing obvious damage, though it will continue to constantly replicate.

Over time, if your CD4 cells are damaged, your body may be less successful at protecting you from bugs and germs that can lead to infection or illness. There is more detailed information about HIV here.

HIV services in New Zealand

There are many support and medical services available to people living with HIV. The New Zealand AIDS Foundation (NZAF) offers free counselling and support to anyone affected by HIV. New Zealand also has a network of HIV peer support groups and there are HIV specialists based at hospitals around the country. You can find more information about services here

Feeling well?

You may feel fine and have no symptoms, even though you’ve been diagnosed with HIV. This is often referred to as ‘asymptomatic infection’. For most people this lasts for several years and, for some, the asymptomatic phase can last 15 years or more.

If you are not displaying any symptoms and you feel well, it is still important to look after your health through diet and exercise. The effect of HIV is different for everyone but, generally, taking care of yourself physically and emotionally will lessen the impact of HIV on your lifestyle in years to come. 

Diagnosis and symptoms

Many people, particularly gay and bisexual men, don’t know they have HIV for many months, even years. If you have been diagnosed late, you still may feel well.

When you first contract HIV, your body begins to make antibodies. Some people say they feel like they have the flu. Doctors call this ‘seroconversion illness’, because this is the very first time your body is trying to cope with HIV. 

Common symptoms are:

  • A high temperature (fever)
  • Sore throat
  • A blotchy rash on the body
  • Tiredness
  • Swollen glands
  • Joint and muscle pain 

Initial coping strategies

Everyone deals with the initial diagnosis in their own way. You will have your own feelings and reactions to work through. There is no right or wrong way to respond.

Working out where your HIV status fits into your identity may take a little while, or it may be a relatively simple process for you. We all have many words we use to describe parts of ourselves; words for our gender, job, sexuality, ethnicity, race and beliefs. Taking time to work out where your HIV status fits in with your identity can be a helpful process.

When you first get the news it can be a good idea to take a few days out to relax and de-stress if you need to. Your doctor should be able to provide you with a medical certificate for work, if required. Developing strategies to deal with the news will be important. Make time to think, react and feel over the first few weeks if you can.

Having people to talk to and support you can be important. You could talk to a close trusted friend, your partner or a relative. You may prefer to talk with people who have experiences of HIV. NZAF can put you in touch with peer support groups or people living with HIV in your area. Alternatively, you can book an appointment with our specialist counsellors here.

Working out how much information to take in over the first few weeks can be a tricky process. You will soon find out whether you like to find out as much as you can as soon as possible, or prefer not to have an information overload and go slower.

What does having HIV mean in the long term?

Every person is different, and there is no set answer about how HIV will affect you over time.

There are many factors that will affect your wellness. These factors include:

  • How well you look after yourself emotionally and physically
  • Decisions around treatments
  • How well treatments work for you
  • Genetic factors
  • Co-infection with other illnesses such as sexually transmitted infections and hepatitis

In the last 30 years there have been dramatic advances in the treatment of HIV. Consulting with your doctor or HIV specialist is important for finding out what treatment is right for you. For more information, see the HIV treatment section.

Words and terms you might hear – what they mean

There are many medical terms you will encounter while working with doctors and specialists. If you don’t understand them, always ask.

Difference between HIV and AIDS

AIDS stands for Acquired Immune Deficiency Syndrome and is an advanced stage of HIV infection. These days, very few people with HIV develop AIDS, largely thanks to advances in medications. AIDS can develop when HIV weakens a person’s immune system so their body is no longer able to protect itself against infections and cancers that a normal immune system would fight off.

Window period

The early stage of HIV infection, when there is a lot of HIV in your body. During the window period, blood tests can give a negative result because your immune system is still reacting to the virus. This means very few antigens and antibodies are being made. This high viral load means the risk of you passing on the infection is much higher at this time than at others.

CD4 cells

CD4 cells (or T4-cells or T-cells) are a subset of your white blood cells. CD4 cells are a critical part of your immune system. They are infected and destroyed by HIV. The numbers of CD4 cells vary on a regular basis and are influenced by a variety of other factors apart from HIV, for example, in the case of another infection such as the flu or levels of stress. Sometimes, in HIV infection, they can be depleted to such dangerous levels they are unable to play their part in helping your immune system work properly.

Contact tracing

An anonymous process to find out if anyone else, such as a previous sexual partner, may have been unknowingly exposed to HIV, and to alert them to get tested.

Seroconversion (seroconversion illness)

Seroconversion is the period of time during which HIV antibodies develop and become detectable. Seroconversion generally takes place within a few weeks of initial infection. It is often, but not always, accompanied by flu-like symptoms (see Diagnosis and symptoms section).

Viral load

Viral load is a measure of the amount of HIV in your bloodstream. Knowing how much HIV is present is an indicator of how active the virus is and the risk of future damage to the immune system. A blood test will determine your viral load. It is important to have a baseline viral load value to assess the response to the treatment, and a baseline resistance test to check that the appropriate drugs are used.

Immunosuppression

This refers to the suppression of the immune system and its ability to fight infection and certain cancers. Immunosuppression may result from some diseases, such as HIV, or from certain drugs.

Asymptomatic infection

Asymptomatic infection describes HIV infection with no symptoms.

Adverse reactions (allergic side effects)

These can occur when the immune system reacts badly to a drug. The symptoms are usually a rash or fever.