- Deciding to tell someone you are living with HIV can be a fraught decision because of HIV stigma.
- While there may be benefits to sharing your status, it is usually not necessary or relevant.
- Framing your disclosure in a matter-of-fact way, or one that reflects medical advances, may make it easier and may give you more control over the situation.
Telling people that you are living with HIV can be a difficult decision to make. Stigma surrounding HIV means that people may be quick to make judgements about you or your behaviour and may act differently towards you once you’ve shared that you’re living with HIV. However, there is also the possibility that sharing your status can unburden you and provide important forms of support that you may need.
This page outlines some general considerations regarding sharing your status or deciding to keep it private.
Many people have outdated ideas of what it means to have HIV. They may have had little education about treatment advances or ways of preventing HIV beyond condoms. Other common misconceptions include that HIV is accompanied by frequent illness, that it inevitably leads to AIDS, or that it is always passed on to babies. Unfortunately, many still have a visceral negative reaction to any mention of HIV; this is rooted in stigma and misinformation.
The weight of choosing to tell someone you have HIV is likely to be impacted by the persistent stigma that surrounds it. Because of this stigma, it means that you need to decide if sharing your status is in your best interests, and if it is necessary. You should carefully consider possible pros and cons of disclosing your status, prior to doing so.
In most instances, it simply isn’t relevant and there’s no need to share that you are living with HIV, unless you choose to. Many people living with HIV decide that the majority of people they come into contact with have no need to know about their health status. Here, your relationship with the person you are disclosing to takes on central importance.
There are specific considerations for sharing your status with sexual partners, your employer and healthcare providers. There may be important legal considerations in some cases; this will differ depending on where you live.
While some people living with HIV have reported negative reactions to disclosure, there are also those who have been met with incredibly supportive and empathic responses. A third outcome that many report is a feeling of anticlimax: instead of an overly positive or negative response, they find that the build-up to the moment of disclosure is more nerve-wracking than the event itself. This ‘shoulder shrug’ type response is often very helpful for a person living with HIV, as it helps to normalise the virus with little fanfare or excessive emotion.
Importantly, you can neither predict nor control how someone responds to your disclosure. You also cannot control what they do with the information after you tell them. In instances where you are financially or otherwise dependent on someone, and a negative response can have material consequences, such as a loss of income or shelter, the decision requires more careful consideration.
Sharing that you are living with HIV
Living with HIV has changed a great deal, but not everyone knows or understands this. It might be helpful to share some current information about HIV when you choose to share your status.
Most people living with HIV can expect to live healthy lives, with a normal life expectancy. The vast majority will not go on to develop AIDS and will have good outcomes if they start treatment as soon as possible after their diagnosis and remain adherent to treatment. Treatment has been simplified, is highly effective and has few or negligible side effects in most cases.
One important finding – that people living with HIV with an undetectable viral load cannot transmit it to their sexual partners – has been described as life-changing by many people living with HIV. This is known as 'Undetectable = Untransmittable', or simply U=U.
Regardless of whether you’re sharing your status with a sexual partner or someone else, it usually helps to frame it in a way that highlights some of the medical advances that have been made both in terms of treating HIV and preventing transmission. Not only does this help to educate people you choose to share your status with, but it also works to destigmatise and normalise speaking about HIV.
It is not your responsibility to educate others about HIV, but this framing may be a helpful way of approaching disclosure. It could also be a way of starting a general discussion about HIV, gauging the reaction, and then deciding if it is the right time to share your status or not.
“So much has changed when it comes to HIV. I take only one pill a day, with no side effects. I can expect to live as long as someone without HIV, and because I’m undetectable, I don’t worry about passing it on to my sexual partners.”
“I’m working with my doctor to find the right medication to control my HIV. There are so many treatment options these days. If one medication doesn’t work well for me – either to control my HIV or because of unpleasant side effects – it’s easy to find one that will work. Treatment has come such a long way.”
“U=U is an amazing scientific finding! If someone living with HIV is on successful treatment, the virus drops to very low levels. This is called undetectable because it is no longer detected on a lab test. When a person is undetectable, they can’t pass HIV on when having sex – even if a condom is not used. It’s made a huge difference for me.”
Recently, many people living with HIV share their status by simply stating, “I am undetectable.” Like the word AIDS, the term 'HIV positive' has become stigmatised and may cause discomfort. While it may be important to explain what undetectable means, there may be a sense of empowerment and a newfound identity by disclosing in this way.
For many people living with HIV, talking about it in an empowering manner, where they have been able to take control of the situation and manage their diagnosis confidently, has made it much easier to share their story with others. Speaking about HIV in this way communicates hope and resilience, instead of shame.
However, this also means that you may need to take some time to process and understand your diagnosis and its implications before you feel ready to tell anyone about it. For some, this needs to be done privately, while others find it easiest to navigate this initial period with the help of their partner, close friends or family. It’s important to find what works best for you.
After careful consideration, you may decide that you will choose to share your status with some people, but not others, or in some instances and not others. The process of deciding to share this information can feel burdensome and it may cause you significant anxiety or worry trying to anticipate someone’s reaction. It may be most helpful to first share your status with a very trusted friend or confidante, or even a trained professional, such as a psychologist. It is highly beneficial for your first sharing experience to be supportive and non-threatening.
Ultimately, it is your choice to tell someone else that you are living with HIV. It is also up to you to decide how and when to do this, or if you need additional support when doing so. Disclosure should not be a traumatising event, and your wellbeing – mental, emotional and physical – should be the top priority.