Pros and cons of disclosing your HIV status

Image: Domizia Salusest | www.domiziasalusest.com

Sharing your HIV-positive status with anyone – whether it be a sexual partner, a family member or your employer – can be a difficult decision to make. There are both advantages and disadvantages to telling people about your status and these need to be carefully weighed up before you decide to disclose. There are only a very few instances where you are legally obliged to tell others about your status. In all other contexts, the decision lies solely with you.

Here are some pros and cons to think through before you discuss your HIV status.

Advantages

  • Sharing your status with others when you feel comfortable to do so can be incredibly empowering. This can help you deal with any shame you may feel about living with HIV.
  • Speaking about HIV openly combats stigma. Stigma usually arises from a lack of understanding, misinformation, and not ever having met someone with HIV. As someone who is living with HIV, you can help to change this.
  • Disclosure becomes easier the more you do it. While some people may react negatively, most people living with HIV find that sharing their HIV status with someone they trust is a positive experience.
  • It is helpful to have a support system of people in your life who know you have HIV. This can make a big difference in times of illness or when dealing with the psychological and emotional effects of stigma.
  • Sharing your status with health professionals such as your GP, dentist, pharmacist or psychologist will mean that they are better able to provide appropriate care that meets your needs as a person living with HIV.
  • Talking about having HIV may lead to increased trust and feelings of intimacy in a relationship or close friendship. You may never be able to allow yourself to be vulnerable if you feel you may be rejected; there is a sense of relief knowing you are accepted and loved despite your status.
  • While sharing your status with an HIV-negative sexual partner can be very difficult, it may also give you the opportunity to speak about ways in which your partner’s health can be protected, such as using condoms, you being undetectable or your partner starting PrEP.
  • While your HIV-status is not the most important thing about you, it may have shaped your experiences and contributed to who you are in some meaningful way. Sharing this aspect of your journey allows people to understand you better.

"Talking about having HIV may lead to increased trust and intimacy in a relationship or friendship."

  • While disclosing in the workplace is rarely obligatory, telling your employer can allow them to make any necessary accommodations, such as time off work for medical appointments.
  • Some people living with HIV find it easiest to share their status publicly, such as on social media. While this is not the right option for everyone, it can help you control your narrative and choose when and how much to reveal. It can also act as a ‘once-off’ disclosure without having to disclose repeatedly to various people in your life.
  • Some dating apps also have the option to show your HIV status to everybody who views your profile. Some people find that this upfront form of disclosure filters out people with discriminatory beliefs and means that they don’t need to mention HIV with everyone they chat to.

Disadvantages

  • Unfortunately, there is still a great deal of stigma and many negative perceptions about HIV-positive people, which may be revealed the moment you mention your HIV status, either through someone’s questions or their altered behaviour.
  • Although there is no chance of transmitting the virus sexually if your HIV is well-managed and virally suppressed (Undetectable = Untransmittable, or U=U), very few people who are not diagnosed with HIV are aware of this fact. They may even refuse to believe it if you tell them. Thus, you may be opening yourself up to rejection from possible sexual or romantic partners even if there is no chance of infecting them.
  • If you feel forced to disclose when you are not ready, it can have a negative impact.  Disclosure needs to be on your terms. It is your information to share.
  • Once you disclose your status, you cannot take it back. This is important in instances where disclosure could be harmful for you or have material consequences for your life – such as telling someone you are financially dependent on or someone you live with.

"Many people living with HIV have been subjected to rejection and hurtful reactions."

  • Discussing your HIV status may not go well if people have very stigmatising beliefs about HIV. While you may be able to educate people you disclose to, you may not want to take on that burden. Changing deep-seated beliefs and attitudes can be very challenging and it may not be something you want to take on.
  • At work, you may experience negative reactions ranging from maltreatment to a breach of confidentiality and even to unfair dismissal. While discrimination is illegal in many countries, it takes a great deal of effort, time and emotional energy to fight this type of injustice. You need to think very carefully about whether disclosing in the workplace is at all necessary, will have any potential benefits, or if it is simply best not to disclose.
  • Choosing whether or not to tell a sexual/romantic partner can be a complex decision. Many people living with HIV have been subjected to rejection and hurtful reactions, even when they take necessary precautions to prevent infection. You may be met with shock, anger, disappointment and disgust.
  • Depending on where you live, there may be differing laws regarding whether or not you have to tell sexual partners that you are living with HIV. In some places, you are always required to share your status with a sexual partner, regardless of their risk of infection. In other jurisdictions, there can be legal implications to not telling someone, if the sex you have puts the other person at risk of HIV infection or if HIV transmission occurs.
  • While you may request that people you share your status with keep it confidential, you do not have much control of this after you have disclosed. Your status might be used against you or can become a topic of gossip.
  • While upfront disclosure on dating apps works for some, there are also many HIV-positive people who find that it is inherently stigmatising and that it does not give a potential partner the chance to know you without the label of ‘HIV positive’.
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