Disclosing our HIV status

By disclosing our HIV status we expose ourselves to stigmatizing attitudes, rejection, harassment, and in some instances, human rights abuses. In contrast, by disclosing our HIV status we also create space for honesty between ourselves and the people we choose to tell. We also have the opportunity to challenge the stigma and stereotypes associated with HIV by being visible.

In some countries, disclosing our HIV positive status to sexual partners is mandatory accordingly to the law, however laws like this have proved difficult to enforce. In other countries, an individual’s right to privacy is protected, regardless of HIV status.

Disclosure is not an easy task, and involves understanding the possible results of divulging our HIV status to another person.

But talking about our HIV status, whether positive or negative, to others is a necessity. Finding an supportive environment and being able to reach out to friends, partners, or family members reduces the sense of isolation commonly experienced by people living with HIV (PLHIV). Disclosure to sexual partners also helps to enhance pleasure and intimacy, enabling people to make important decisions to prevent HIV transmission.

PLHIV are entitled to choose when or to whom they divulge their HIV status, and should be provided all the information and support on how to do it safely since disclosure can lead to both negative and positive results. In some circumstances, disclosure can be beneficial, enabling one to access support that in turn minimize depression, improve physical health, and regain confidence.

When thinking about disclosure, be sure to go over the five Ws: who, what, when, where and why. For example: Whom do we need to tell? What do we want to tell them about having HIV? What are we expecting from them? When should we tell them? Where is the best place to have this conversation? Why are we telling them?

…to partners

There are no established protocols or strategies for telling our romantic or sexual partners about our HIV status. However, it is important that they know the health implications and have themselves tested as well. It helps to refer them to a counsellor who is experienced in working with HIV issues and who can assist us in the process of disclosure.

Reasons for disclosing to sexual partners:

  1. The longer we delay disclosure, the harder it can become—and the more resentment we might have to deal with later.
  2. We might want to meet other people and sexual partners who are HIV-positive seeking other positive partners.
  3. Disclosing makes it more likely that we’ll stick to practising sex that’s safer for us and our partner.
  4. If something unexpected happens, (e.g. a condom breaks during sex), we’ve at least told our partner(s) about the potential risks.

If we are afraid, embarrassed, or simply uncertain about disclosing to our current and past sexual partners, we should find a way to inform them anonymously and urge them to get tested or ask help from support groups and organizations for this process.

In some contexts, laws may require us to disclose our status to people, including sexual partners under certain circumstances. These laws vary from country to country so it’s best to consult experienced legal aid groups, human rights organizations or HIV support groups on these laws and on any legal implications our decision may have. Some cases of non-disclosure have ended up in court. Learn about the laws that affect people living with HIV in your country using from the Global Network of People Living with HIV (GNP+).

The dilemma is: when does a casual partner become a potential relationship? In an ideal world, we would all disclose our HIV status (whether we are positive or negative) to every partner, and all our partners would be supportive.

But in the real world, disclosure sometimes leads to rejection; the person whom we tell may not appreciate our trust and disclose our status irresponsibly to others; or our partner may want to talk about it at length while we ourselves are in no mood to play the role of a counsellor or an educator at the time. In other cases our partner might be supportive from the onset.

The point is that we need to prepare for any eventuality. In most cases, the way that the person reacts initially often changes over time depending on your relationship.

...to family & friends

Families can be complicated. Some of us have tightly-knit families while others may have distant relationships with our families. For PLHIV, a supportive family environment is very helpful, especially for times of psychological adjustment. Such support can buffer our stress and promote well-being. It can help us prepare for the different possible consequences of disclosure, which at worst can include rejection, abandonment and even physical assault, especially in an uninformed and stigmatizing environment.

...to health workers & other people

We do not have to disclose our HIV status to all our relatives, friends, employers, colleagues or even to every doctor, dentist or other healthcare professional. It is important, however, to tell healthcare professionals whom we are seeing for other conditions that we are positive so that they have a clear picture and can help us make decisions about our health accordingly. Health workers are required to maintain the confidentiality of any information we tell them as part of a patient’s right to privacy.

Considerations when disclosing

  1. Talk to the people closest to you – people like friends and family.
  2. Think about the pros and cons of telling them your HIV status. What kind of relationship do you have with these people? How are they going to react? It is always important to assess risks if disclosure would put you into dangerous situations.
  3. How can this person support you? Are there any particular issues that will affect disclosure?
  4. What level of knowledge does this person have about HIV? If there is a gap, it may be best to educate the person first.
  5. For each person you want to tell, ask yourself if the person needs to know now—or if it’s better to wait.

Timing & location

The key to disclosure is also about timing where and when you tell someone.

It can be difficult to talk about HIV with someone whom we have just met. For example, you can imagine that disclosing in the middle of sex is not a good idea. Alternatively we might be in a bar, at a party or another place where it feels awkward to talk about HIV. But continuously putting it off can cause problems later. If our partner finds out about it but can’t accept it at that moment, the situation can be more upsetting for both parties.

Often we need to go to a more neutral environment, arrange to meet up later or decide to talk about HIV once we know the person better. We can drop HIV into the conversation very early on, in a very casual and matter-of-fact way, so that if the other person can’t accept it, no time is lost. Meanwhile, we can also give hints or guess the status of the partner.

There are also certain situations where disclosure to family members is perceived to compound existing issues and concerns, such as when our parents are ill or when the family is coping with other challenging issues or crisis. It can also be complicated by whether our families they accept our sexual orientation or gender identity, and at which stage they are in accepting our sexuality. Timing is an essential element, but in the end, our families may need to know our HIV status, and just like us, they embark in a process of acceptance.

Things to remember

  1. We are HIV positive and we have a virus. That doesn’t mean we have done anything wrong. None of us have to apologize for simply for being HIV positive.
  2. There’s no perfect roadmap for how to disclose. Trust your instincts, not your fears. Also, keep it simple— you don’t have to tell your entire life history.
  3. Having some information on hand, such as a phone number for an HIV support group or an online educational resourcecan be helpful. Encourage people to research these trusted sources of information and to get back to you with questions or concerns they may have.
  4. Even if you don’t get the response you were hoping for, remember that it can take some time to process major information. Millions of others have dealt with difficult disclosure experiences and have found their way through it— you will too.

If you are still not able to tell close friends, family members or other loved ones about your HIV status, allow yourself to draw upon the support and experience available to you through organized groups in the HIV community.

Acknowledgement: This information has been adapted from the “Next Steps” booklet by the Australian Federation of AIDS Organisations (AFAO).