Disclosing Your Status
If you are living with HIV, the thought of disclosing, or telling, your status to others may be incredibly overwhelming and scary. These are completely normal feelings to have. Some may worry that the person they disclose to might not keep things private, and their status will become public knowledge. Others may worry that telling a close friend, family member, or significant other might lead to judgment and the break-down of that relationship; some may worry that they may face violence or abuse from sex or drug-injecting partner if they disclose. There are so many reasons to be overwhelmed with disclosing, and the numerous possibilities that can happen after sharing your status can be quite stressful to consider.
Despite all of this, talking about HIV and building a support network that you trust is critical in coping with your diagnosis and sticking with treatment. Additionally, disclosing your status may be required by law in some cases, such as with sex and drug-injecting partners (depending on the state you live in) since HIV can be transmitted via sexual or blood-to-blood contact (such as during rough sex or needle sharing). While this may be frustrating, it is important to consider in order to protect yourself from future legal action as well as to protect others from getting the virus.1,2
A complete list of each state’s HIV-related laws can be found within The Center for HIV Law and Policy’s State HIV Law database. Additionally, a list of all states with HIV- and STI-specific (sexually transmitted infections, of which HIV is one) laws has been published by the Centers for Disease Control and Prevention. Although many aspects of disclosing your status are up to you, if you live in an area where these laws are present, disclosure to sex partners (or drug-injecting partners) may be a necessity. However, in most locations there are services available that can help you remain anonymous in these situations or disclose for you if need be.1
It’s important to remember that outside of those who may legally need to be notified (which can be anonymous), not everyone needs to know about your diagnosis, and those you do tell can be informed in the way you want them to be. You can control when, where, and how you tell those who you want to know or who need to know.
Common tips for conversations about HIV status
When disclosing your status to someone, there are some tips you can try to help the conversation go as smoothly as possible.
Feel confident in your mutual trust and respect
When deciding whether or not to disclose your status, consider whether the person you are disclosing to respects and trusts you as much as you respect and trust them. Although HIV-related conversations can be alarming and have strong emotions or reactions, a foundation of trust and respect between you and the person you are talking to can help the conversation go as smoothly as possible and help ensure that your status stays private between the two of you (if that’s what you prefer). If you do not trust someone you’re considering telling or think they will disrespect you by stigmatizing you or sharing your information, it may be a better idea to avoid telling them at this time.
Test the waters first if need be
If you are uncomfortable diving right into a conversation about your HIV status, it may be a good idea to drop hints to bring the topic up briefly before disclosing. Asking questions like “do you know anyone with HIV?” or “have you been tested for HIV?” may open up a smaller-scale conversation before you share your status. You may be surprised by their responses, and some may be positive. If their initial responses are negative and you still want to open up to them, it may be necessary to tailor your approach or consider other options. Another possible idea is to practice role playing with a trusted family member, friend, or therapist beforehand to prepare for different responses and reactions you may receive while disclosing.
Seek outside, professional support
As mentioned, a mental health professional, including a therapist, counselor, or other trusted individual, may be helpful in role playing situations and practicing what you want to say before having a conversation about your status with someone else. Not only can a therapist help you prepare for these important and sometimes overwhelming conversations, but they can also be there in the event you experience issues. In some situations, disclosing your status may not go exactly as you planned, or you may not get the reaction you were hoping for. If this happens and you are feeling rejection, disappointment, or fear (among many other potentially overwhelming emotions), a mental health professional can help.
Disclose as early as possible
Although it may be hard to do, and may not always be possible, disclosing as soon as you feel safe and comfortable doing so may be beneficial. Disclosing your status to past sex and drug-injecting partners shortly after you find out you are HIV-positive may help prevent them from continuing to spread the virus if they have HIV as well (especially since they may be the person you got the virus from and may not be aware that they have it, too).
Disclosing as early as possible can also help protect you from legal issues. It may also be easier to have conversations about HIV early on with new potential sexual partners before reaching the point of sex, in order to avoid needing to have discussions during the heat of the moment. Waiting to share this information with new sexual partners, especially ones you may want to have a relationship with, may make them feel as though you have been keeping a secret from them and impact the trust you have for each other.
When it comes to disclosing to family, friends, and loved ones, the sooner you start creating your network of love and support, the sooner you will be able to reap its benefits. You do not need to manage your HIV journey alone, and minimizing the time where you are the only one who knows can help you best cope with your diagnosis.
Create a positive and safe environment
When you disclose your status, you get to choose where and when you do so. Making sure to set aside a time where the two of you can talk uninterrupted is important in facilitating a positive conversation. The person you are disclosing to might need time to process this information, or may have questions for you. Making sure you have ample time to talk and are in a setting where sensitive issues can be discussed is important. If you are worried about the reaction of the person you’re disclosing to, especially if you are worried that they may get violent or abusive, it may be a good idea to find a semi-public place, just to be safe. Finding somewhere that you can talk in private, while still being in view of others nearby (such as in a public park) may be a good idea to prevent any dangerous reactions.
You can also disclose with your healthcare provider present if you feel more comfortable doing that. However, no matter what, if you are ever physically threatened or hurt by another individual, call the National Domestic Violence Hotline at 1-800-799-SAFE (1-800-799-7233).
Be prepared to provide information and options
You may receive many questions or misconceptions about HIV when you disclose to someone, especially when disclosing to a sex or drug-injecting partner who may be at risk of getting the virus, too. The more information you are armed with during your discussion, the better. Educating them on what HIV actually is, how it is spread, and safer sex or drug-injecting practices (especially if you are planning to continue having sex or injecting drugs together) may be helpful in opening up productive dialogue around HIV. You can also provide information on effective antiretroviral therapy (ART), PrEP (pre-exposure prophylaxis), and PEP (post-exposure prophylaxis) in the event that you are going to continue to have sex or inject drugs together.
Remain open to regular check-ins
It’s important to remember that opinions might change when it comes to HIV and the disclosure of someone’s HIV status. This may mean that someone who was initially hesitant, angry, or confused during your conversation may take time to process and feel more open and encouraged later on when it comes to your status. Conversely, someone who may have been open to the conversation when you first disclosed may change their mind and may not want to have sex or inject drugs with you down the road. Having regular check-ins and conversations on the topic of HIV may help navigate changes in opinions, questions, and concerns as they arise. The conversation around HIV is not a one-and-done issue, and may need to be revisited on multiple occasions for everyone involved to feel respected and heard.1-5