Whether you just found out you are HIV positive or if it’s something you have been living with for a while, there are bound to be situations in your life in which you will be faced with the decision of whether or not to disclose your HIV status. The decision of who to tell that you are infected with HIV, is a personal choice and you may often find yourself trying to balance honesty with protecting your right to privacy. As with many issues surrounding HIV, there are no absolute answers that are right for everyone.
It takes time to adjust to being HIV positive. With that in mind, it’s a good idea to not rush into disclosing your status without first giving it some thought. Wanting to share this knowledge with someone else is a perfectly natural reaction, especially when it’s new to you and you’re feeling overwhelmed, vulnerable, and uncertain about your life and your future.
Even if you’ve been living with HIV for a while, you’ll likely find yourself in situations in which you may need to consider disclosing your HIV status. Wanting to tell family members, employers, fellow employees, and friends is very natural. However, disclosure can also create new problems for you. While there have been significant improvements in the general public’s awareness of HIV, there’s often still stigma attached to HIV and to those who have it.
Here are some general disclosure tips:
- Be selective. Choosing whom to tell or not tell is your personal decision. It’s your choice and your right.
- Consider the five “W’s” when thinking about disclosure: who, what, when, where and why. Who do you need to tell? What do you want to tell them about your HIV infection, and what are you expecting from the person you are disclosing your HIV status to? When should you tell them? Where is the best place to have this conversation? Why are you telling them?
- Easy does it. In most situations, you can take your time to consider who to tell and how to tell them.
- Consider whether there is a real purpose for you to tell this person or if you are simply feeling anxious and want to “dump” your feelings.
- Telling people indiscriminately may affect your life in ways you haven’t considered.
- Having feelings of uncertainty about disclosure is a very common reaction.
- You have a virus. You don’t have anything to apologize for simply because you are HIV positive.
- Keep it simple. You don’t have to tell the story of your life.
- Avoid isolating yourself. If you are unable to tell close friends, family members or other loved ones about your HIV status, allow yourself to draw upon the support and experience of others in the HIV community. Consider joining a support group or an online forum, such as the POZ Forums.
- There’s no perfect roadmap for how to disclose. Trust your instinct, not your fears.
- Even if the response you receive in a specific situation, doesn’t go the way you’d hoped, you’re going to survive it and your life will go on.
- Millions of others have dealt with this experience and have found their way through it. You will get through it too.
Disclosure to Spouses, Partners and Significant Others
Studies have shown that most HIV-positive people disclose their HIV diagnosis to their significant other—their spouse or partner—within a few days of learning their status. One approach to disclosure that some HIV-positive people follow is to only tell people who come in direct contact with your bodily fluids, such as blood, semen or vaginal secretions.
The issue of disclosing your status to your partner or significant other can be complex. If you’ve had unprotected sex with your partner, it’s important to alert him or her to the fact that he or she may be at risk and should get tested. Regardless of your partner’s decision to test and his or her results, by disclosing, you’re making him or her aware of the need to practice safer sex together in the future.
You might also want to tell your partner in an effort to get the emotional support you need. It’s important to have someone to listen to your concerns, to offer suggestions, and to just simply be there. While some people fear becoming a burden when they have health problems, sharing your experiences can often be an opportunity for building a deeper intimacy and a stronger partnership.
It’s perfectly normal to experience anxiety about telling a partner. Before he or she can respond to your needs, your partner may first feel anxiety about his or her own HIV status (which can only be addressed through HIV testing) and may also feel angry and upset if the HIV infection occurred sexually, outside of the relationship. Disclosing your HIV status can add strain on the relationship so it’s important for you to give some thought as to when and how to disclose. Depending on the nature of your relationship, you might want to consider some professional couples counseling.
It’s important for you to be aware of what the laws are in your state with regard to contact tracing and partner notification. Contact tracing refers to the efforts of government agencies to identify any and all persons who might be at risk of contracting HIV from an infected person. Partner notification refers to information conveyed to spouses, sexual partners, needle sharers and others who might be at risk for HIV infection. The laws regarding this vary from state to state. In many states, partner notification can be done anonymously through the state’s Department of Health. The Department of Health in your state is a good source of information about what the legal procedure is in your state and how it might apply to you.
General contact tracing and partner notification issues to consider:
- In general, physicians may breach patient confidentiality in this situation and notify a sexual or needle-sharing partner of an individual’s HIV infection who is at identifiable risk of infection, as long as they act in good faith and offer only the information necessary to help the notified person protect against future risk of infection or seek medical treatment.
- These guidelines do not require that a physician disclose the name of the person who might be putting an individual at risk, although in some instances that identity will be obvious.
- These guidelines do not justify disclosures about HIV information to insurers, employers, schools or other institutions.
- Efforts at contact tracing need not breach medical confidentiality with regard to the HIV-positive person. They need only advise people that they may have been exposed to HIV.
Dating and Disclosure
Deciding if and when to disclose one’s status to a potential date or sexual partner can be handled in different ways. Some people prefer to get the issue out into the open immediately and disclose their status right away, sometimes even before a first date. Other people prefer to wait and see if the relationship develops before disclosing their status.
While in most cases, sharing your HIV status is a personal choice, in some states, there are specific laws relating to disclosure, which actually make it a crime not to disclose your status to a sexual partner. Most of these laws were passed in the early years of the epidemic and reflected ignorance and fear about HIV.
If you have concerns about your state’s laws as they apply to your HIV disclosure, you might want to research the subject through your state’s Department of Health or get in touch with your local AIDS service. The Sero Project has developed a map identifying states that have HIV-specific criminal statutes.
The real benefit of disclosing to a date or to a casual or anonymous sex partner may be a personal one. It takes strength of character to be honest in such a circumstance. At the same time, telling someone you are HIV positive at the beginning of a possible relationship or before having sex puts you in a vulnerable position. It’s never easy to predict if you’ll receive a positive or negative response.
Despite the fact that most people know about safe sex and how the virus is transmitted, fear and stigma are still a reality in relation to HIV, and disclosure can stir up very strong emotions. Your status may deter some people from proceeding further in a relationship with you.
General dating and sexual partner disclosure issues to consider:
- Keep what you say as simple and as 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 may be at first, whether negative or positive, be aware that reactions can change in time.
Disclosing to Family and Friends
If you have a good relationship with your family, disclosing to them may lead to an even stronger relationship. Your family is likely to be concerned about your future. You may find yourself educating them about HIV, as well as giving them emotional support. As they come to see that you’re getting on with your life, and that your life is still good, their anxieties are likely to ease. Your family can be a good source of support depending on the nature of your relationship with them.
Realistically, you also have to consider that if your relationship with your family has been less than ideal in the past, this news may further strain relations, at least for a while.
HIV-positive parents face different and difficult decisions concerning disclosure to their children. These include important considerations of the prognosis of parental health and the matter of custody planning for underage children. Understanding the implications of HIV/AIDS may be beyond younger children. Decisions must be made about what and when to disclose.
Studies show that most people disclose their HIV diagnosis to close friends within days of learning the news themselves. Some people are more informed about HIV than others. A close friend may be able to offer new ways of thinking about your situation. A friend’s greatest contribution may be simply listening to you.
While most friends will respect that what you have revealed was told in confidence, you need to be aware that your HIV status may end up becoming the subject of gossip among your other friends and acquaintances. In this situation, as in other difficult times in life, some friendships will endure and even deepen while others will fade away. If you have a tight-knit family or social group, or you live in a small community or a rural area, confidentiality may be harder to maintain. You might consider discussing with a counselor or some trusted person outside of your regular life about how to proceed.
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 tell them.
- 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.
Disclosure in the Workplace
Sometimes strong friendships develop with co-workers. In such situations, it’s natural to want to tell a co-worker friend with whom you feel particularly close about your HIV status. There may also be times when you’re feeling particularly upset or stressed about something related to your status and have the impulse to disclose what’s on your mind.
Even with a co-worker who’s a good friend, give careful consideration to disclosing your positive status. There’s a balance to be maintained between the natural exchanges which occur in a friendship and protecting your need for privacy. Be aware that even what you’ve said in confidence may still end up becoming the subject of gossip in the workplace. When that happens, gossip can move up and down in the chain of command in the workplace, with unforeseen results that may have serious consequences. Once you have disclosed your status, it’s very hard—if not impossible—to take the information back. Your co-worker friend may very well live up to your best expectations. But you have to be prepared to deal with potential disappointments as well.
General tips to consider with regard to the workplace:
- Tell the person you have something important to tell them.
- Stress that what you’re going to discuss be kept in the strictest confidence.
- Keep what you say as simple and as direct as possible.
- Tell them why you want them to know.
- Let them know you are sorting out issues related to your HIV status and their support is important to you.
If you’re applying for a job, be aware that under the Americans with Disabilities Act (ADA), prospective employers do not have the right to make inquiries about your health or the existence of a disability prior to a conditional job offer. However, they may legally inquire if you are aware of any physical limitation that would interfere with your ability to perform the essential functions of the job.
In a situation where an HIV-related illness is interfering with your work to the extent that it might place your employment in jeopardy, arranging to sit down privately with your boss and revealing your situation may be the way to go. You might even consider bringing a letter from your doctor explaining the current state of your condition, and how it might affect your ability to perform your job. Because the ADA regards a person with HIV or AIDS as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of your job. Even if you are in a situation in which your health requires invoking the “reasonable accommodation” clause, sometimes all that’s needed is a letter from your doctor. It can make nothing more than a general statement that you suffer from a “chronic condition,” without specifically necessitating the disclosure of your HIV status.
It’s important for you to keep in mind that individual state laws generally do not require anyone in your workplace to maintain your confidentiality if you disclose your status. The ADA helps to protect the confidentiality of an employee’s medical information, but it does not specifically address protecting the confidentiality of orally and voluntarily disclosed medical information.
Many companies have guidelines to deal with potentially complicated legal matters, such as dealing with disabilities and its procedures for determining “reasonable accommodations.” It’s your right to have this information, and you do not need to disclose anything about yourself when requesting this information. Knowing your company’s policies will help you to determine whether or not you need to disclose your HIV status.
Hopefully, you will not need to turn to legal recourse to protect your rights. However, if that happens there are laws to protect you.
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.
- If you do disclose, tell the person you want to speak with that you have something important to discuss with them.
- Stress that you’re requesting that what you’re going to discuss be kept in strict confidence.
- 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.
- Keep what you say as simple and as direct as possible.
- Tell them you are receiving appropriate health care.
- Mention if you may need a particular accommodation, such as occasional time off for a medical appointment.
- Tell your boss that you will make every effort to insure 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.
Disclosure to Medical and Other Healthcare Providers
When treating patients, all medical providers are supposed to use “universal precautions,” which means special procedures to protect themselves against any transmissible infection, not just HIV. In most cases, it’s helpful to inform your health care providers about your HIV status in order for them to give you the best possible care. Knowing that you are HIV positive can help your doctor identify certain health problems and ensure that he or she doesn’t prescribe any medications that could interact with your HIV meds. Additionally, some states legally require that you disclose prior to receiving medical care. If you’d rather not disclose your status to your health care provider, be sure to check with your state’s department of health or contact your local AIDS service organization to find out about the laws where you live.
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.
Health care providers cannot deny their services to someone simply because the person is HIV positive. If a doctor or other health care 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.
General tips to consider with regard to medical and health care providers:
- All health care providers are bound by confidentiality laws.
- By telling a doctor, a nurse or other health care providers, 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 health care provider may share HIV information with a patient’s insurance company if the information is necessary to pay for medical care.
- If you’re in doubt about whether you have to reveal your status for either medical or insurance purposes, or indeed legally for any other reason, call your local Department of Health or AIDS service organization. In some instances you may learn that it’s necessary to disclose in order to have access to medical resources and services.
Last Revised: February 14, 2016