Living with HIV

Getting a positive HIV test is a shock. You can be full of fear and even anger, blame or shame. All of these reactions are completely normal!

  • You are NOT going to die tomorrow – most HIV positive people live long and healthy lives
  • There is hope – there are places to go and people to talk to
  • A positive HIV test does not mean that you have or that you will necessarily get AIDS
  • You are not alone – there are many women like you who are living with HIV or AIDS
  • Empower yourself – find out everything you can about HIV and AIDS by reading and talking to others with HIV and by getting good health care and support

A few weeks after you receive your diagnosis, it’s advisable to go back to see your doctor. You may have a list of questions or you might want to have another test to make sure that your test results were right.

HIV can affect your body in a number of different ways. You may feel perfectly well, and have no symptoms or illness. You may feel tired and lacking in energy. If you have had HIV for sometime, you may have some of the symptoms of more serious immune damage.

Whether you have symptoms or not, it is important to regularly monitor your health, any changes in how you are feeling, and to learn how to best take care of your health.

Because there is no cure yet, the best way to treat HIV is to:

  • monitor the state of your immune system and the activity of HIV in your body
  • prevent serious damage to your immune system
  • prevent HIV opportunistic infections occurring
  • treat symptoms as soon as they appear.

There is some evidence to show that HIV affects women differently to men in some respects. This may be due to physical, social or psychological differences. HIV may affect your:

  • hormones
  • body weight and shape
  • reproductive system
  • menstruation and menopause
  • lifestyle and social circumstances.

Regarding your lifestyle, your work has the potential to affect your health and well-being, in both positive and negative ways. Work may be boring and stressful, or just an economic necessity. Or it might be interesting and fulfilling. If you have a choice to work or not work, or whether to work full-time or part-time, it might be a good idea to look at the role of work in your life. Take time to decide what’s best for you – you don’t have to rush into any decisions.

Take time out for yourself to relax, especially if you experience constant tiredness as may positive women do. It’s important to keep doing the things that you enjoy in life – things which make you feel good about yourself and raise your self-esteem.

Remember that to help your immune system stay healthy and to prevent HIV-related weight loss, it’s important to eat a well-balanced diet. Exercise, such as yoga and walking, can also help maintain your lean muscle mass and improve your energy levels and mood.

You can benefit from regular tests designed to monitor how your immune system is coping. Most women feel well until their immune systems are so low that they get severe infections. It’s recommended that you have two ongoing and regular blood tests, usually done every three months, called ‘viral load’ and ‘CD4 count’. The results of these two tests looked at over time can help predict when your immune system needs help, before you get a severe infection. This allows you and your doctor to discuss preventative medicine and start this so that you do not become ill unexpectedly.

Women living with HIV or AIDS are advised to have a pap smear every six months. You can contact your own doctor or Positive Women Inc to arrange smear test.

In the course of managing your HIV infection, you may have contact with a range of health care providers, including doctors (general practitioners), infectious disease specialists, complementary therapists, nurses, gynaecologists, physiotherapists, psychiatrists, counselors and social workers.

Choosing your doctor or other health care provider is an important process – choose someone you can trust. Feel free to ask questions. Your doctor should be someone who knows, or is willing to learn, about HIV and AIDS and how this virus acts in women’s bodies. The relationship with your doctor needs to be one of partnership, and of understanding and respect, which goes both ways. If you do not feel comfortable with your doctor, get another one.

Many women experience wellbeing through complementary therapies such as Chinese medicine, naturopathy, acupuncture, Reiki, homeopathy, massage and yoga. We can refer you to qualified practitioners who work with and are sensitive to people with HIV.

Integrative treatments combine standard medical therapies with other natural and holistically orientated therapeutic strategies. Many consider that an integrative approach to health care in general, and HIV care in particular, results in significantly improved treatment outcomes.

A good doctor and health care provider will:

  • explain the risks, costs and benefits of any treatment, including side effects
  • suggest or be open to alternative ways of treating or managing symptoms and side effects
  • protect your privacy and respect your confidentiality at all times.

Acting early to treat depression, sleep problems and any drug, or alcohol- related issues, may help to reduce long-term harm. A healthy diet and exercise, and maintaining an interest in life can all have effect on your health and wellbeing.

There have been many medical advances around HIV and there are a wide variety of medications available to help slow down the progression of HIV to AIDS. HIV treatments are known as antivirals or antiretrovirals. They stop the virus from replicating, which protects your immune system from damage.

Your doctor or HIV specialist will advise you when it is the best time to go on medications and recommend the most appropriate medication. However, remember, this is a joint process. Ask questions, find out all you can about the medications, the regime and the side effects, to ensure it is the best for you. You have the right to ask questions and to make choices.

HIV positive women have the right to a full and active sex life. Sex can be a really positive way to feel good about yourself and your partner. Having sex can make you feel desired and valued, happy and fulfilled. However, it can be hard to feel relaxed about sex when you have HIV because you may be afraid of transmitting the virus to your partner. Learning to talk about sex and negotiate safe sex with a partner may be difficult. Understanding the ways in which HIV can be transmitted may help you decide which sexual activities are safe, and which ones pose a risk.

Safe sex is any sex that avoids semen or vaginal fluid from getting into the bloodstream of another person. There is no risk of transmitting HIV through massage, masturbation or kissing, providing the person has no cuts, sores or scratches on their hands. If they do have cuts, sores or scratches, it’s advisable to wear latex gloves. Talking about your feelings to a counsellor, or to other women living with HIV or AIDS, may help you find ways of exploring your sexuality safely.

YES! You can reduce the chances of your baby getting HIV to below 2% by taking antiretroviral drugs and by not breastfeeding. HIV is rarely transmitted from mother to infant in the womb. The more risky periods are during delivery or after delivery through breast milk.

There are a number of key factors that affect the likelihood of transmission: your health, your viral load and you immune system. In general, the lower your viral load, the less likely you are to transmit HIV to your baby.

  • You can still be hugged, touched and touch others
  • You can still be kissed and kiss others
  • You cannot transmit HIV through sharing cups, food, showers or through casual contact
  • You can still have sex
  • You can still have children
  • There is no need for you to leave your job
  • An you can keep living life to the full

You don’t need to rush out and tell people that you have HIV. Sometimes it might be helpful to take some time to adjust to the news yourself before you decide to tell your family or friends.

Perhaps ask yourself the following questions:

  • Who can I trust with the information that I am HIV positive?
  • Will they offer me support?
  • Will they judge me?
  • Will they respect my confidentiality?

You do not have to tell:

  • your friends
  • your employer
  • your work colleagues
  • doctors, dentists or other health care professionals.

However, it might be wise to tell any doctor treating you – particularly over the long term or for serious conditions – that you have HIV.