08 May 2003

How to tell others (Disclosure issues)

Disclosure of a loved one’s seropositive status is difficult and often a shock, and no two people react in the same way to the news. Affected others’ responses can range from involvement, caring and support on the one hand, to abandonment, indifference, and antagonism on the other.


Disclosure of a loved one’s seropositive status is difficult and often a shock, and no two people react in the same way to the news. Affected others’ responses can range from involvement, caring and support on the one hand, to abandonment, indifference, and antagonism on the other.

Sadly, HIV-infected persons are often rejected by their significant others because of the stigma that still surrounds this disease in many societies - including our own.

1. Should I disclose my HIV-positive status
Whether or not to disclose their HIV-positive status is a difficult decision for HIV-infected individuals to make because disclosure (or non-disclosure) is often followed by major and life-changing consequences.

Counsellors should help their clients to consider the benefits as well as the negative consequences disclosure may have for them as individuals. Because disclosure is a very personal and individual decision, all relevant personal circumstances should be taken into account.

Clients should also decide if they want full disclosure (i.e. publicly revealing their HIV status) or partial disclosure (i.e. telling only certain people such as, for example, a spouse, relative or friend). Disclosure can be accompanied by the following benefits:

  • Disclosure can help people to accept their HIV-positive status and reduce the stress of coping on their own.
  • Disclosure can help a person to access the medical services, care and support that they need.
  • Disclosure can help people to protect themselves and others. Openness about their HIV-positive status may help women to negotiate safer sex practices.
  • Disclosure may help to reduce the stigma, discrimination and denial that surround HIV/Aids.
  • Disclosure promotes responsibility. It may encourage the person’s loved ones to plan for the future.

Disclosure can also be accompanied by negative consequences such as: problems in relationships (e.g. with sexual partners, family, friends, community members, employer or colleagues), rejection, and the conviction that people are constantly judging one.

Clients should think through all the pros and cons very carefully and plan ahead before they disclose their HIV-positive status.

2. Guidelines to disclose your HIV positive status
The following guidelines may help a person who wants to disclose their HIV positive status. (The guidelines will also assist counsellors in helping their clients to make the decision to disclose):

  • Take time to think things through. “Disclosure is a process, not an event”. Try to think of the implications of disclosure. Consider in advance what the reaction of family, friends, colleagues and others might be. Make sure it is what you want to do. Plan how you are going to do it.
  • Be practical. Develop a “plan” for disclosure. Such plan will include preparations that need to be made before disclosure, who you will inform first, how and where the disclosure will take place, and what the level of disclosure will be.
  • It may be a better idea to disclose gradually rather than to everyone at once.
  • Choose the person/people you want to disclose to carefully: It must be someone who is accepting, mature, empathic and supportive.
  • Make sure that the time and place are right for disclosure
  • Identify sources of support, such as groups for people living with HIV and Aids church members and counselling organisations.
  • Counsellors can help you to role play to help you prepare for disclosure.
  • Accept yourself just as you are.
  • Be prepared for a shocked and even hostile reaction from other people. The people close to you will probably learn to accept your HIV status over a period of time - if not immediately.
  • Once a decision to disclose has been made, it may be easier to begin with those nearest to you: relatives, family, friends, or someone to whom you are very close and whom you trust.
  • Think about the likely response of the person you decided to disclose to. Assess how much the person you plan to disclose to knows and understands about HIV and Aids. This will help you to decide what you need to tell the person and how to tell them. Such preparation will make disclosure less traumatic for both of you.
  • Be strong enough to allow others to express their feelings and concerns after your disclosure.
  • Get information and support to “live positively”, and make sure that you know how to practise safer sex to protect your sex partner/s.
  • If you do not want to disclose your status to somebody, don’t feel unduly pressurised to disclose.
  • Ask the counsellor’s help if you need him or her to mediate the disclosure process if the need arises (e.g. to be present when you disclose your HIV-positive status to a partner).
  • Keep in mind that disclosure can be very empowering.

Disclosure can be particularly difficult for gay and lesbian people. They may find it difficult to discuss their sexuality with a support group of non-gays or non-lesbians - who may be prejudiced or who may simply not understand the issues involved. The counsellor should refer the client to support groups that are sensitive to the needs of gay and lesbian people (there are many non-governmental gay and lesbian organisations that focus on the needs of gay and lesbian people.)


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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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