Updated 25 June 2014

Should you disclose?

How do you disclose your HIV status to your loved ones? And how do you provide support if someone discloses to you?


Disclosing your HIV-status is a very personal decision and you should think carefully about who you disclose it to, and when. Many people decide not to disclose and that is okay too.

In some cases even if you would like to disclose, it may be recommended that you don’t as you may be harmed or thrown out of the community. But telling others can be good because you can get the most appropriate health care. As with condoms, one size does not always fit all. Every person has different needs and reacts differently.

If you feel you need to disclose your status remember…

  • There are many new developments in the treatment and prevention of HIV, so many new facts and figures, that it could be daunting to take everything in at once. Be honest about what you don't know. Don't rely on second hand information. Ask if you are not sure.
  • It is helpful when a third party is present when disclosing. A medical expert could help put the test results in context. It's a virus that should and can be managed.
  • You can keep your close friends and loved ones informed about issues that are important to you.
  • Some of the questions you may be asked when disclosing your HIV positive status are: How did you get it? Who did you get it from? When did you get it? But you don’t have to answer them.
  • After you have been diagnosed HIV-positive it is important that you get the care and support that you need. If you have a low CD4 count you may need treatment. You can also reduce the chances of transmitting the disease to others when on medication. And you can be found guilty of a felony for not telling a sexual partner you are HIV-positive before having intimate contact.
  • You don’t have to tell everybody. Take your time to decide who to tell and how you will approach them. Be sure you’re ready. Once you tell someone, they won’t forget you are HIVpositive.
  • You may want to tell your employer if your HIV illness or treatments interfere with your job performance. Tell them you want to continue working, and what changes may be needed in your schedule or workload. Get a HIV counsellor and expert to join the meeting with your boss, if you need someone with authority and knowledge.

What medical health practitioners should do but don’t always…

  • Doctors are not always good at counselling HIV. When cancer is diagnosed, the whole family is usually called in to the doctor's rooms. But because of stigma it's not always possible with HIV. Social workers, nurses, psychologists should al be involved in planning the best way to disclose, when and where and with whom.
  • A doctor should never give bad results or even a good result over the phone. You have the right to request that the result should be discussed in person.
  • As soon as possible after the result and after test counselling you should be referred to a support group and a psychologist if you need one.


If a loved one discloses his HIV status

If someone discloses their diagnosis to you remember . . .

  • Some of the questions you should refrain from asking: Who did you get it from? When did you get it? Retribution, anger and guilt are a waste of time. It shifts the focus away from treatment and planning for the future
  • Most people who receive a HIV-positive diagnosis experience a range of emotions over time. These could include: fear of rejection by friends and loved ones; fear for sickness and death. Others don't react at all. Listen closely to what they have to say.
  • Be aware of your own feelings before you try and help someone. What are your fears? Remember HIV is not infectious through social contact.
  • Deeds are more therapeutic than words: touch and hold your friend/family member. Now, more than ever they need to feel you will be there for them.
  • Allow the loved one to take the lead in deciding what he or she wants to tell you. Be open for anything that that they may feel comfortable telling you about.
  • Your friend or loved one may not feel like visitors that day. Don’t be afraid to phone again and visit on another occasion.
  • Tell your friend what you’d like to do to help. If he or she agrees, do this. Keep any promises you make.
  • Phone to say you are bringing over your friend’s favourite food. But ask to make sure it is something he or she is able to eat. Be precise about the time you are coming.
  • If there are young children living with your friend, offer to take them or pick them up from school or day care. Ask if you could make them lunch or supper or take them to the dentist or doctor.
  • What’s in the news? Discuss current events. Help your friend from feeling the world is passing him or her by. Keep your friend up to date on mutual friends and other interests. Your friend may be tired of talking about symptoms, doctors and treatments.
  • If your friend expresses concern about his or her looks, be gentle, but acknowledge these feelings. Just your listening may be all that is needed. Try pointing out some positive physical traits. It may make him or her feel better.

Be kind to yourself because . . .

  • If it's someone you love, be willing to deal with your own anger about the test result. But if you want to help, refrain from turning your own emotions into judgement. He's more than likely beating himself up about his own bad judgement.
  • Share the grief, your anger, and helplessness - whatever emotions you may have, either with friends and loved ones or in a support group.
  • The people who are taking care of your friend may also be suffering. They need a break from the illness from time to time. Offer to stay with the person. Invite them out or offer to accompany them places.
  • Hope is important. Talk with your friend about the future: tomorrow, next week, next year. It is helpful to look toward the future without denying the reality of today.

Sources: Charl Hattingh, a clinical psycologist from Cape Town working with HIV/Aids, Prof. Glenda Gray, director of the Perinatal HIV Research Unit (PHRU) at Chris Hani Baragwanath Hospital, Helen Struthers, programme director at the PHRU, Prof. Elna McIntosh, sexologist at DISA Health Care in Johannesburg,

(*) Pieter van Zyl is a fellow of the HIV/AIDS & the Media Project, a partnership between the Perinatal HIV Research Unit and the Journalism Programme at the University of the Witwatersrand. This article is made possible by the support of the American People through the United States Agency for International Development (USAID). The contents of this article are the sole responsibility of USAID/Johns Hopkins University Project South Africa and do not necessarily reflect the views of USAID or the United States Government.


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Dr Sindisiwe van Zyl qualified at the University of Pretoria in 2005. She is a patients' rights activist and loves using social media to teach about HIV. She is in private practice in Johannesburg.

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