Being diagnosed with HIV can feel overwhelming. Aside from doctor’s appointments, medication management, and dealing with HIV symptoms, life with HIV can lead to many different and challenging emotions. For many people, making decisions about sharing their HIV status with others — including whether to do so and with whom — can be a significant stressor.
Telling others about your HIV status is also referred to as “disclosure” or “partner notification.” Disclosing your HIV status to a date, friend, or family member can be nerve-wracking. Too many people are uneducated about HIV and may respond with fear or ignorance. They may have questions that are difficult to ask and difficult to answer. You may worry about facing stigma if you disclose your status, despite wanting to be as open and honest as possible.
When thinking about disclosing your HIV status, it helps to arm yourself with facts about HIV and treatment, and to get support from others. Here is what you need to know about HIV disclosure, including who to tell about your diagnosis, how to explain it, and some tips for sharing your status with others.
You can disclose your HIV status to anyone. However, you may want to approach this discussion differently depending on whom you are telling.
Many people living with HIV choose to tell their loved ones about their status. This can include both immediate family members and extended family members.
Several myHIVteam members have shared their status with their families. As one member wrote, “I immediately told my closest family and a few friends.”
The majority of members who have shared their diagnoses have had good experiences. Like one member explained, disclosing their HIV was an opportunity to find support and acceptance: “My family and I are close-knit. I was never in the closet; never hid the facts from my family. They are always accepting. They have always been there for me and educated themselves to help me over the years.”
When family members know you are HIV-positive, they can help support you emotionally and physically. They can also:
If sharing your HIV status with your family — or particular people in your family — doesn’t feel safe or comfortable, you do not need to do so. As one member shared, “I’ve only disclosed my status to my best friends and my sister.”
However, finding someone safe to tell may be important, as people who disclose tend to respond better to treatments than those who do not.
You may also want to account for the age of the people you’re considering disclosing to. While many people with HIV eventually disclose their status to their children, you may want to wait if your children are too young to understand, if you believe it will frighten them, or if you suspect they won’t be able to keep the information as private as you might like.
When disclosing your diagnosis to family members, make clear what you do and do not want them to do with that information. Is it OK if they discuss it or share it with others, for example? Clarify, too, what — if anything — you want, need, or expect from them. This will help them to better understand the role they should take as you seek treatment for HIV.
Many people have friends who are as close as family — if not closer. If this is you, then you may want to consider telling these people about your status. If you choose to tell them, this will likely have similar positive effects to telling family members.
As with family members, it’s important to be clear with your friends whether or not they can discuss your diagnosis with others. Help them understand, also, if there are ways they can support you.
You don’t have to tell your employer that you are HIV-positive, and they can only ask about your status under certain sets of specific conditions. If an employer, manager, or other co-worker asks you and you aren’t sure if it is legal, you can ask them to show you the basis for the question.
Different people make different choices about disclosing at work. As one member shared, “Haven’t told my co-workers. They have no need to know.”
You may need to tell your employer of your status if you need to:
Most of the time, your employer will be required by law to keep your status confidential. However, if you are clearly sharing it so that people know, they may not be required to keep it as such.
While state laws around this are subject to change, most places in the United States do not currently require you to disclose your HIV status to doctors, dentists, or other health care providers. However, doing so may be a good idea. Knowing your status — as well as any medications you're on for treating HIV — can help providers give you the best possible medical advice and medical care. With that information, they can take care in not prescribing you medications for other health conditions that could have unwanted interactions with any treatments you’re using for HIV. Moreover, in knowing your HIV status, your doctor is better equipped to diagnose you if you develop new symptoms.
Sharing your diagnosis can also be important if a health care professional — such as a dentist — will be handling your blood or other bodily fluids.
Note that your status will be protected under confidentiality laws, along with your other medical information, and that knowing you are HIV-positive does not give doctors the right to ask about your sexual practices.
Before having sex with a partner — whether part of a short-term or long-term relationship — you need to disclose your HIV status to them. HIV is a sexually transmitted infection (STI, also known as a sexually transmitted disease or STD). In fact, many states have laws requiring you to disclose your status to someone before you have sexual contact, and the penalties for not doing so may be high. This is in the name of public health and HIV prevention to help reduce overall transmission.
Disclosing to partners can be scary, but you may feel empowered afterward. As one member explained, “I’ve told my potential partner, and he wasn’t turned off by my status. … Telling someone else was scary. But, at the same time, it made me feel more confident about my status and how I want to move forward in life.”
If your HIV isn’t undetectable or you aren’t on antiretroviral therapy (ART), it’s especially important to disclose your HIV status to current partners before intercourse. This gives them the chance to understand and make informed choices about whether or not they want to have sex and whether to use safe-sex practices such as condoms or PrEP (preexposure prophylaxis). When taken according to the proper regimen, PrEP can help prevent your partner from contracting HIV, leading to safer sex. Disclosing your status will allow your partner to decide if they want to try PrEP, determine when to start it, and ensure it’s used properly.
But even if your HIV is undetectable or you’re on ART and you can’t transmit HIV through sex, disclosure is still important. In this instance — which is more common now than ever — it’s more about honesty, full disclosure, and empowering your partner to understand and make their own informed choices.
If you’ve had recent sexual partners or partners any time after your HIV diagnosis, you will need to tell them too. This is true even if you aren’t with them anymore, since they might have been exposed to the virus through previous sexual contact with you.
If you don’t want to notify past partners yourself, your local health department can do it for you without giving them your name. They can also help you disclose to a current partner if you fear their reaction to learning of your status. You may choose to work with a social worker who can help you do this in a way that feels safe to you.
Before you disclose, make sure you are ready to do it. Consider whether you feel safe with the person if you do so and how you plan to do it. Be ready with information from your medical providers about your condition and how you are doing.
In preparing to disclose, consider any questions the people you’ll be telling might have. For instance, family and friends may want to know where you contracted HIV, and you should be prepared to respond to this question (whether you plan to provide an explanation or not). They also may want to know if you’re taking medications for your HIV and whether the HIV is under control. Additionally, they may want to know what your medical provider has told you about your prognosis (outlook).
Trusting the person you’re disclosing to is key. As one member advised, “As long as the individual is trustworthy, the disclosure process is fine.”
Make sure you know how you will respond if you have a negative experience disclosing your HIV status. It may be helpful to have a self-care plan ready for afterward, as disclosing can be difficult and take a lot out of you emotionally.
If you are nervous, you may want to test the waters before you disclose. Have conversations that will help bring to light any underlying prejudices or stigmas the person might have about HIV. If you’re comfortable, encourage them to educate themselves about what is true about the condition before you tell them. Members of your health care team may be able to practice discussing disclosure points with you.
Deciding whether or not to disclose an HIV-positive status can be complicated and nerve-wracking. However, doing so can also have a wide variety of benefits.
People who disclose often feel liberated and like they are no longer “living a lie.” Some feel like they don’t have to hide anymore and can be who they really are. This may help improve their mental health as they live with HIV. Nondisclosure, on the other hand, can make some people feel isolated and alone.
Disclosing can also help you build a support system, both at the time of your initial diagnosis and through the ups and downs of treatment. It may also reduce the risk of HIV transmission if the people around you know you have been diagnosed with it.
Finally, the act of disclosing in and of itself can be empowering. When you claim all of who you are, it’s easier to feel confident about yourself.
Are you or a loved one living with HIV? Consider joining myHIVteam today. On myHIVteam, the social network and online support group for those living with HIV, over 35,000 members talk about a range of personal experiences and struggles. Disclosure is one of the top 10 most frequently discussed topics.
Are you worried about disclosing your HIV status to someone you care about? Have you had a disclosure experience that you would like to share with others? You can do that and more at myHIVteam.