WHAT ARE THE ISSUES?

When you test positive for HIV, it can be difficult to know who to tell and how to tell them. In some states, there are partner-notification laws. Partner notification refers to information conveyed to spouses, sexual partners, needle-sharing partners, and others who might be at risk for HIV. Sharing your status with anyone else is your choice.

Telling others can be beneficial because:

    • You can get love and support to help you deal with your health.
    • You can keep your close friends and loved ones informed about issues that are important to you.
    • You don’t have to hide your HIV status.
    • You can get the most appropriate healthcare.
    • You can reduce the chances of transmitting HIV to others.

Telling others may be challenging because:

    • Others may find it hard to accept your health status.
    • Some people might discriminate against you because you have HIV.
    • You may be rejected in social or dating situations.

You don’t have to tell everybody. Take your time to decide who to tell and how you will approach them. Be sure you’re ready. Once you tell someone, they won’t forget you have HIV.

GENERAL GUIDELINES

Here are some things to think about when you’re considering telling someone that you have HIV:

    • Know why you want to tell them. What do you want from them?
    • Anticipate their reaction. What’s the best you can hope for? What’s the worst you might have to deal with?
    • Prepare by informing yourself about HIV. You may want to give articles, links, or a hotline phone number to the person you tell.
    • Get support. Talk it over with someone you trust and come up with a plan.
    • Accept that you can’t control how others will deal with your news.

SEX OR INJECTION PARTNERS

It can be very difficult to disclose your status to sexual partners or people you share needles with. However, it is very important that they know so they can get tested, make decisions to protect their health, and, if they test positive, get the healthcare they need. There are two ways that you can share your status with sex or injection partners.

You tell your partners:

    • These conversations can be hard. You may have been exposed to HIV by one of your partners or you may have exposed one or more of them without knowing.
    • Learn how to start the conversation.

The health department tells your partners:

    • This is sometimes called “Partner Services.”
    • Health department staff tell your current and former partners that they may have been exposed to HIV.
    • The health department will provide your partners with testing, counseling, and referrals for other services.
    • Partner Services programs are available through health departments and some medical offices and clinics.
    • Your healthcare provider, social worker, case manager, patient navigator, or HIV testing center can help you find a Partner Services program.

General partner disclosure issues to consider:

    • Keep what you say as simple and direct as possible.
    • Give yourself credit if you have been practicing safer sex with the sexual partner you’re disclosing your status to. You are already behaving responsibly with that person.
    • If the person you’re disclosing to reacts negatively, remember that’s only one person. Not everyone is going to react the same way.
    • Remember that you should give the person you’re disclosing your status to some time to process the information. Whatever their reaction is at first, negative or positive, be aware that reactions can change in time.

FAMILY MEMBERS AND FRIENDS

It can be difficult to decide whether to tell your family members and friends that you have HIV. Many people fear that their relatives and friends will be hurt or angry. Others feel that not telling relatives and friends will weaken their relationships and may keep them from getting the emotional support and love they need. It can be very stressful to keep an important secret from people you are close to.

Family members and friends may want to know how you were exposed to HIV. Decide if or how you will answer questions about how you got HIV. You may find yourself having to educate them about HIV, but your family and friends can be a good source of support depending on the nature of your relationship with them.

Your relatives and friends may appreciate knowing that you are getting good healthcare, that you are taking care of yourself, and about your support network.

While most people will respect that what you have shared was told in confidence, you need to be aware that your HIV status may end up becoming the subject of gossip among other family members, friends, and acquaintances. If you have a tight-knit family or social group or you live in a small community or rural area, confidentiality may be harder to maintain.

General tips to consider when disclosing to family and friends:

    • Keep what you say as simple and as direct as possible.
    • Tell them you have something important to discuss.
    • Offer to answer any questions they may have.
    • Let them know they don’t have to worry about your health.
    • If you have particular HIV-related issues or concerns that you’re trying to sort out, let them know.
    • Request that what you’re going to discuss be kept in confidence.
    • Ask them to be there for you.
    • Tell them how much they mean to you and how much you love them.
    • Don’t be afraid to show your feelings and to express how important this issue is for you.

EMPLOYERS

You do not have to tell your employer, but you may want to share your status in case you need to take extended leave or alter your schedule. If your HIV is interfering with your work to the extent that it might place your employment in jeopardy, you might consider disclosing to your boss or supervisor. Get a letter from your healthcare provider that explains what you need to do for your health (taking medications, rest periods, etc.). Or you could provide a letter from your healthcare provider that states that you suffer from a “chronic condition” without specifically disclosing your HIV status.

People with disabilities are protected from job discrimination under the Americans with Disabilities Act (ADA). As long as you can do the essential functions of your job, your employer cannot legally discriminate against you because of your HIV status. Your employer is required to reasonably accommodate your needs if you are otherwise able to perform the essential duties of your job. Knowing your company’s policies will help you to determine whether or not you need to disclose your HIV status.

If you’re applying for a job, prospective employers do not have the right to inquire about your health or whether you have a disability prior to a job offer per the ADA. However, they may legally inquire whether you are aware of any physical limitation that might interfere with your ability to perform the essential functions of the job.

General tips to consider with regard to employers:

    • Unless your HIV status affects your current ability to perform your job, you are under no legal obligation to disclose your status to your employer.
    • Consider very carefully what your purpose is for disclosing your status to your employer.
    • Keep what you say as simple and as direct as possible.
    • Tell them you have something important to discuss.
    • Stress that what you’re going to discuss is confidential. Be mindful that a request for confidentially is not an absolute guarantee that it will be respected.
    • Some employers will rise to the occasion and be supportive. Others may be disappointing in their responses and you will understandably feel hurt and angry.
    • Let them know that you are receiving appropriate healthcare.
    • If you need a particular accommodation, such as occasional time off for a medical appointment, mention it.
    • Tell them that you will make every effort to ensure that your work is properly covered and that you’re committed to doing your job reliably and well.
    • Medical-related employer decisions about HIV (or any other disability) must be based on facts about you, not simply an employer’s opinions about HIV.

COWORKERS

Think carefully before disclosing your status to your coworkers—even those you consider to be good friends. What you’ve disclosed in confidence could end up becoming the subject of gossip in the workplace, with unforeseen and possibly serious consequences.

General tips to consider with regard to the workplace:

    • Keep what you say as simple and as direct as possible.
    • Tell them you have something important to discuss.
    • Stress that what you’re going to discuss be kept in the strictest confidence.
    • Tell the person why you want them to know.
    • Let them know that you are sorting out issues related to your HIV status and their support is important to you.

HEALTHCARE PROVIDERS

In all but one state, you are not legally required to disclose your HIV status when seeing a doctor, dentist, or other healthcare provider (Arkansas requires disclosure to dentists). However, you should keep in mind that healthcare providers may be able to provide better care when they are aware of all factors that may be affecting your health. For instance, failure to disclose HIV medications may make it more difficult to identify adverse drug interactions. And any information you share with healthcare providers should remain confidential because it is covered by provider-patient privacy protections.

All healthcare providers are supposed to use universal/standard precautions, which are a standard set of guidelines to prevent the transmission of bloodborne pathogens from exposure to blood and other potentially infectious materials.

Your medical information (including your HIV status) is protected by the Health Insurance Portability and Accountability Act’s (HIPAA) Privacy Rule and cannot be released without your permission except in circumstances where not disclosing the information could result in harm to another person.

Healthcare providers cannot deny their services simply because a person has HIV. If a healthcare provider is uncomfortable treating someone with HIV and makes that known to you in any way, be aware that you have legal recourse in such situations.

Disclosure of your HIV status should have no effect on whether your healthcare provider asks about your sexual practices. A good healthcare provider is going to ask about your sex life if that information is relevant to the reason you are seeing this particular provider. As the patient, you always have control over what information you do and do not share with your healthcare provider about your sex life. Just keep in mind that a healthcare provider with all of the relevant information can better assess the situation and provide you with the recommendations, care, and treatment you need to maximize your health.

General tips to consider with regard to healthcare providers:

    • All healthcare providers are bound by confidentiality laws.
    • By telling a doctor, nurse, or other healthcare provider, you do give up a degree of privacy, but that does not release them from adhering to laws regarding confidentiality.
    • Your status should be treated as privileged information. If, for instance, a doctor’s employee discusses details with you that another patient might overhear, politely request that such conversations be discussed in private.
    • A hospital or other healthcare provider may share HIV information with a patient’s insurance company if the information is necessary to pay for medical care.

THE BOTTOM LINE

For the most part, it is your choice who you choose to tell about having HIV. In some states, you are legally required to tell sex and injection partners and certain healthcare providers. Make sure you understand the laws in your state.

Telling people that you have HIV can be difficult but has certain benefits such as expanding your support system and getting individualized recommendations to help you live a longer, healthier life and protect others from getting HIV. It’s your choice who and what you tell to others. You can get help from your local HIV service organization, HIV case manager or counselor, a social worker, or other trusted family, friends, or support systems.

MORE INFORMATION

WebMD: Talking about Being HIV-Positive

Avert: Sharing Your HIV-Positive Status

Lambda Legal: Privacy, Confidentiality, and Disclosure

Lambda Legal: HIV Criminalization

HIV Criminalization: State Laws Criminalizing Conduct Based on HIV Status

Reviewed May 2024

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