Telling people

It is hard to know how people will react when you tell them you are HIV positive. Many people find that family and close friends are supportive and understanding although that is not always the case. Unfortunately, some people react very negatively, usually based on fear and ignorance about HIV infection and stigma about HIV.

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Disclosure is a very personal process. You don’t need to rush out and tell people. You may want to give yourself some time to adjust to your diagnosis. If you think an important person in your life may have a bad reaction, you may decide to wait until you are feeling more confident or you may decide not to tell them. It is usually very beneficial to tell at least one important person in your life to make sure you have some support.

Ask yourself

  • Who can I trust with my information?
  • Who will offer me the support that I need?
  • Who will be able to accept the news without judging me?
  • Who will respect my privacy and be able to keep this information confidential?
  • What’s best for me?

Being ‘out’ about your HIV status can be very empowering. Alternatively, you may want to keep your HIV status (and any other aspects of your personal life/health information) private.

Disclosure can be additionally fraught for women with children, as many women feel a pressing need to protect their children from possible discrimination.

Remember, once you have told someone, you cannot ‘untell’ them. If you don’t want everyone knowing you have HIV, be careful not to tell people who gossip. When you do tell someone, you can ask them to keep your confidence although that can be stressful for them. You could ask them to be careful who they tell, let them know if you’ve told anyone else they can also talk with, or suggest other people they could turn to for support.

If you want to talk about having HIV with someone outside your circle of family and friends, it can be useful to talk with a counsellor or HIV peer support person. They can help you work through particular issues and can also help you decide who you want to tell, when you want to tell them and also how best to tell them.

Telling your partner

If you are in a relationship but haven’t told your partner about your HIV diagnosis, you will need to think carefully about how, where and when you can broach the subject. Your HIV diagnosis may come as a shock to them and they may be scared or confused. They might also need to be tested for HIV. Your doctor or HIV community organisation staff can provide support to help you work through this process.

Telling your partner can be difficult but it is often important. You will probably need their support and understanding as you learn to live with HIV. For many women, their partner becomes a major source of support.

It is important not to delay telling your partner for too long as the longer you leave it, the more difficult and complex it may become. Some people react badly to the idea that their partner has been keeping their HIV diagnosis a secret from them or did not trust them.

You will need to discuss sex as soon as you can so you can come to an ongoing agreement. Be reassured, once you start treatment and reach an undetectable level, the risk of passing on HIV will be gone. There are many thousands of people with HIV in Australia who are leading active and satisfying sexual lives with HIV-negative partners. Consider making an appointment to see your doctor together to discuss risk of HIV transmission in your specific circumstances.

In some states public health law says you must tell prospective sexual partners that you have HIV before you have sex unless you take reasonable precautions to prevent transmission, for example, using (male or female) condoms. There have been a small number of criminal prosecutions for HIV exposure or transmission. It is difficult to generalise about these cases but it is important to note that all have relied on the fact that the person with HIV did not disclose their HIV-positive status before sex. There have been no criminal prosecutions where a (male or female) condom has been used during sex. If you are concerned about the possibility of prosecution you can contact an HIV-specialist legal service for free advice or referral.

Not all women have partners who are respectful and supportive. Some women, including women with HIV, experience domestic violence. Domestic violence is about power and control. It may include physical violence and/or social and emotional control.

No one has the right to be violent towards you but it can be hard to know what to do about it. Fortunately, there are people out there who can help. If you would like to speak to someone, call the National Sexual Assault, Family & Domestic Violence Counselling Line on 1800 RESPECT (1800 737 732). It is a free telephone and online confidential service for anyone who is experiencing or has experienced domestic violence or sexual assault. It is available 24 hours a day, 7 days a week.

Telling your children

When and how to tell children is one of the main issues that arises after diagnosis for women with children. Some women decide to talk to their children straight away while others wait until their children are much older. It very much depends on your family situation and your judgment. You know your children so you are in the best position to make this decision.

Although there is no definite time to tell kids about your HIV diagnoses, it is worth considering that older children may feel angry if they think that important information has been withheld for a long time. When you decide to tell your children, it can be a good idea to tell some other people who can provide them with support — maybe an aunt or a good friend whom your child trusts. Some women find it useful to reassure their children by talking about some of the more routine aspects of managing their health like it is no big deal, e.g. saying things like ‘I must remember to pick up that script at the doctor’s tomorrow’.

Talking with other positive women, particularly those with children, can be helpful for exploring different approaches you might take. There are a lot of issues to consider, including the repercussions of asking your children to keep the information about your HIV private or possible consequences for them if they tell other friends. Disclosing to your Child, is a great booklet produced by Straight Arrows. It provides more detailed information about issues to be considered and experiences of other parents deciding when to disclose their HIV status to their children. This is also an issue you can discuss with a counsellor or health care professional if you would like some guidance on what might be best in your particular family circumstances.

Telling people at work

You are not required to tell people about your HIV status in most work environments. Similarly, most employers are not allowed to ask whether or not you have HIV. There are a few exceptions. Doctors, nurses and dentists who perform exposure prone procedures are required to know and disclose their HIV status. Everyone who applies to join the Australian Defence Force is tested for HIV, and if found to be HIV positive, will not be allowed to join. The Australian Defence Force also regularly undertakes HIV testing of its personnel. In some states, it is illegal to work as a sex worker if infected with HIV (or other STIs) even if you only practise safe sex and/or have an undetectable viral load.

Telling your doctor and other health providers

It is important to have a doctor who is expert in treating your HIV (see choosing your health care provider) but you may need to see other doctors or health professionals about other issues. You do not have to disclose your HIV status to your doctor, dentist or health care worker although it is often important to tell people providing medical treatment about your HIV infection as it gives them a clearer picture about your health. Seemingly unrelated conditions may be caused by your HIV infection. Any drugs prescribed for another condition may impact your HIV and/or interact with HIV antiretroviral treatment. It is a good idea to tell your dentist as HIV can affect your gums and teeth. Providing full health information to your healthcare providers may prompt them to give you more information which you can use to make your own decisions.

Your HIV doctor can discuss your health with other health care workers directly involved in your HIV care. This is important because optimal care often relies on the expertise of different healthcare providers working in partnership. Your healthcare provider cannot reveal your HIV status to anyone else except in extreme and unusual circumstances; for example, if you are unconscious and requiring emergency medical care and your HIV status is relevant to that care. Your HIV doctor must obtain your consent to discuss your health with other health care workers not directly involved in your HIV care.

Disclosing your HIV status to a healthcare professional may feel stressful but remember, for many doctors working in this field, HIV is ‘normal’. Some healthcare professionals may not be as experienced in treating people with HIV and may be insensitive or actively discriminate. If this happens, remember two things. Firstly, they’re the ones at fault, not you. Secondly, it is illegal to discriminate against a person with HIV, including in health care settings. If you have a bad experience or are refused service, you can make a complaint. You may want to contact your local HIV community organisation to talk through your complaint options, or contact your state anti-discrimination agency or the Australian Human Rights Commission to make a complaint.

Disclosure

DOWNLOAD: A Guide To Disclosing Your HIV status

Disclosing

Disclosing or sharing your HIV status with others can be a difficult emotional decision. But it can also be a confusing decision about your rights relating to casual sex, overseas travel, employment, insurance, medical and dental care and legal issues.

Living Positive Victoria launched a guide to disclosing your HIV status in August 2021, which answers many of your questions relating to your rights and disclosure of your HIV status.

LPV President, Christabel Millar, believes that “sharing our HIV status is an act of love. It signifies our desire to be connected, to be visible and to be understood.

A Guide to Disclosing Your HIV Status contains the relevant law on disclosure of HIV status as it applies in Victoria at 8 December 2020. It has been prepared by the HIV/AIDS Legal Centre (HALC) in partnership with Living Positive Victoria and funded by the Victorian Law Foundation.

DOWNLOAD: A Guide To Disclosing Your HIV status

And watch the video of the online launch, featuring inspiring and compelling stories of disclosure from members of our HIV community.

WATCH THE ONLINE LAUNCH

Peer support workers can also provide you with guidance relating to disclosing your HIV status to others.

Contact Peer Support in your State or Territory