To Tell or Not To Tell: Disclosing Your HIV Status
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Introduction

You're HIV positive (HIV+). You've only just learned about your status. OR you've known about it for sometime. Whether it's still fresh news that you are beginning to absorb or it's something you have been living with for a while, there are bound to be many situations in your life in which you will be faced with the decision of whether or not to disclose your HIV status – to tell others that you are infected with HIV. In a number of circumstances you will find yourself trying to balance honesty with protecting your right to privacy.

Whom do you feel you need to tell? Is there someone you want to tell, but aren't sure what or how much to say? Is there anyone you feel that you must tell like a spouse, a partner, or perhaps someone whom you've been dating? What about informing any sex partners you've been with about your status? Perhaps you're having surgery or you're going to be seeing a dentist. Do you have to advise these or other healthcare providers that you're HIV positive? Do they have a legal right to ask you about HIV status or to deny you care if you are HIV positive? Are there any circumstances when you're legally required to disclose that you're HIV positive?

Along with the many thoughts and feelings you will experience while coming to terms with your HIV infection, these are some of the questions and concerns that may arise with respect to disclosing your HIV status. As with so many of the issues about HIV, or many important life decisions, 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. The reality is that people with HIV need to be selective about disclosing. They need to be selective about who they tell and when they tell them. This process of selection often involves uncertainty and can sometimes be an anguishing experience.

That old fashioned maxim, "easy does it" is a good approach to consider when thinking about disclosure. Even if you've been living with HIV for a while, you'll likely find situations continuously arising in which you may be forced to think about having to disclose your HIV status. Wanting to tell family members, employers, fellow employees, and friends is very natural. However, the truth of the matter is that it can also create new problems for you. Over the past twenty years of the HIV epidemic, there have been some significant improvements in the general public's awareness about and understanding of HIV issues. Unfortunately, there's still a stigma attached to the whole subject of HIV and to those who have it. Yes, there is more understanding and wider acceptance than in the past, but unsympathetic and prejudicial reactions are still not uncommon in some families, in the workplace, and in social situations.


General disclosure tips

You don't have to tell everyone. The choice is yours about whom to tell. Be selective.
Be sure to 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 disclosing is a very common reaction in this situation.
You have a virus. That doesn't mean you've done anything wrong. 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 about your status. If you are still not able to tell close friends, family members or other loved ones about your HIV status, allow yourself to draw upon the support and experience available to you, through organized groups in the HIV community. Consider the AIDSmeds.com community forums for example.
There's no perfect roadmap for how to disclose. Trust your instinct, not your fears.
Whatever the response you receive in a specific situation, and even if it 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.
Choosing whom to tell or not tell is your personal decision. It's your choice and your right.

In the following sections, we take a closer look at some of the specific circumstances in which disclosure may be particularly important to you.


Spouses, Partners, & 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 that many follow is to consider that the only people you need to tell about your status are those who come in direct contact with your bodily fluids such as blood, semen, or vaginal secretions. Most immediately that means a spouse or partner.

The HIV issue in relation to a significant other can be complex. If you've had unprotected sex with your partner, it's a matter of alerting them to the fact that they may have been at risk and should get tested. Second, regardless of your partner's decision to test and his or her results, you're now making them aware of the need for you both to practice protected sex together in the future.

You might also want to tell your spouse or 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. In some situations, helping with daily life chores or picking you up at a doctor's office are things that can also become important. Sometimes people fear becoming a burden when they have health problems. Actually, sharing these daily experiences can be seen as 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. If you've been in a monogamous relationship, and assuming your partner has been HIV negative, the issue of your having had sex outside of the relationship can be highly charged emotionally. Depending on whether you've been getting along well or not up to the time of your diagnosis, disclosing your HIV status can add strain on the relationship. It's important for you to give some thought as to when and how to disclose, while bearing in mind that "keeping secrets" is generally not recommended. This is a time when getting some professional counseling can be very helpful.

It's important for you to be aware of what the laws are in your state with regard to contract 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.

As it has been since the early days of the HIV epidemic in the 1980s, contact tracing and partner notification continue to be highly sensitive issues. A continuing social hostility towards AIDS, along with fear on the part of the general public (often because of their lack of knowledge about the realities of HIV transmission), has understandably made those living with HIV inclined to be cautious and even secretive about disclosing their HIV positive status.

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 infection.


Dating and Sexual Partners

For those who are single and are HIV positive, if and when to disclose can be addressed in different ways. Some people prefer to get the issue out into the open immediately. They will make their HIV infection known right away, sometimes even before a first date. Others prefer to wait and see if the relationship is going to develop beyond a first date or casual dating. Still others feel that as long they're having safer sex, the risk is minimal to the other person, so why even bring the subject up.

With regards to dating, or in casual or anonymous sexual situations, conventional wisdom holds that people with HIV are supposed to inform other people before having sex with them. In many states, there are specific laws relating to disclosure which actually make it a crime not to disclose. Most of these laws were passed in the early years of the epidemic and reflected ignorance and fear about HIV. As a matter of practicality, they have generally proven difficult to enforce.

If you have any concern 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 organization to discuss what's on your mind.Lambda Legal and the Center for HIV Law and Policy have also developed a map identifying states that have HIV-specific criminal statutes.

The reality is that, if you're practicing safer sex consistently, the risk to others is low, and ultimately what realistically matters most is what you do sexually, not what you say.

Perhaps the real benefit of disclosing to a date or to a casual or anonymous sex partner is for you personally. 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.

Although now many more people know about safer 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 in others. You need to know that your status will deter some from proceeding further while many will not allow it stand in the way of either sex or a relationship.

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 process the information. Whatever their reaction may be at first, whether negative or positive, be aware that reactions can change in time.


Family

If you have parents with whom you have a good relationship, disclosing to them can actually lead to an even stronger relationship. Of course, what you're telling them is unhappy news, yet the most common experience is that most seem to find that their parents (and other family members) want to know.

They're 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. Realistically, you also have to consider that if your relationship with them in the past has been less than ideal, this news may further strain relations, at least for a while.

Family: Siblings, Children, and Other Family Members

A man from a large Irish Catholic family reported, "I told my siblings in order of our closeness. ...I chose to deal with their children about it when the time seemed right" (in terms of their ages). Overall his siblings were supportive in their reactions. One brother wept. Another kicked a hole in the wall in frustration. His elderly mother simply said, "What's done is done."

HIV-infected 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 infection may be beyond younger children. Decisions must be made about what to disclose, and whether it should be to all of the children or only to those who are older.

The mother of a then-13-year-old teenage daughter recalls, "I knew if I delivered the news in a calm, matter-of-fact way, she would also remain calm... She was no longer a small child from whom things can be hidden… Over the following months she would sometimes ask more questions. I always answered as simply and as honestly as I could. The fact that she knows I'm being honest with her goes a long way to helping her to be at peace with my status."

General family disclosure tips to consider:

Keep what you say as simple and as direct as possible.
Tell them why you want them to know.
Offer to answer any questions they may have.
Let them know they don't have to worry about your health.
Ask them to be there for you.
Tell them how much they mean to you and how much you love them.
Particularly if the family is a close one, consider how you would feel if someone in your family was in your situation or a similar one and chose not to tell you about it.
Don't be afraid to show your feelings and to express how important this issue is for you.


Friends

Studies show that most people disclose their HIV diagnosis to close friends within days of learning the news themselves. A close friend may be able to offer new ways of thinking about your situation. Some people are more informed about HIV than others. Even more importantly, a friend's greatest contribution may be simply listening to you.

A friend whom you feel close to may appreciate that what you have revealed was told in confidence. However, you also need to be aware that what has been revealed in confidence may still 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 will likely be harder to maintain. In this circumstance you might consider discussing with a counselor or some trusted person outside of your regular life about how to proceed.

General disclosure tips to consider with regard to friends:

Remember that someone you regard as a valued friend is like a family member, but one of your own choosing. Many of the tips for disclosing to your family may also apply when disclosing to a friend.
Tell them you have something important to tell them.
Request that what you're going to discuss be kept in confidence.
Keep what you say as simple and as direct as possible.
Tell them why you want them to know.
Offer to answer any questions they may have.
If you have particular HIV-related issues or concerns that you're trying to sort out, let them know that.
Your friend may have some helpful suggestions. Often just being able to talk about what's on your mind is a great relief and that is enough in itself.
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 openly and to express how how important this news is to you.


The Workplace: Co-workers

Sometimes strong friendships develop with certain co-workers – people you work with, see on a daily basis, and develop relationships with. 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 here 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's response may very well live up to your best hopes. But sometimes there are disappointments, and you have to be prepared to deal with that possibility too.

General tips to consider with regard to the workplace:

Tell them 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.


The Workplace: Employers

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 illness due to HIV-related causes 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.

Often companies keep 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.

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 wonderfully and be genuinely 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 why you want them to know.
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.
Hopefully you will not need to turn to legal recourse to protect your rights. However, if that happens there are laws to protect you.


Medical & Other Healthcare Providers

In the ordinary course of life events, you will likely have occasions to visit different doctors and other healthcare professionals, sometimes for health matters that are not related to your HIV infection. Of course, your primary care physician needs to know about your HIV status. With others healthcare providers you have more of a choice. All medical providers are supposed to be taking "universal precautions," which means special procedures to protect themselves against any transmissible infection, not just HIV. For instance, there's no particular reason your podiatrist needs to know. But in the case of your optometrist or your dentist, while you're not legally bound to disclose, by having that information he or she may be able to identify certain health problems.

Healthcare providers cannot deny their services to someone simply because the person is HIV-positive. If a doctor or other healthcare provider is uncomfortable treating someone with HIV and lets that be known in whatever way to you, you do have legal recourse in such situations. No less important is that a healthcare provider who's fearful of an HIV-positive patient is not one who should be seeing HIV-positive patients.

As far as disclosure of your HIV-related information is concerned, bear in mind that it's generally permitted only after you have signed an approved special HIV release form.

General tips to consider with regard to medical and healthcare providers:

All healthcare providers are bound by confidentiality laws.
By telling a doctor, a nurse or other healthcare providers, you do give up a degree of privacy, but that does not release them from adhering to laws regarding confidentiality.
Sometimes treating your status as privileged information is not as scrupulously observed as it should be. 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.
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.


Conclusion & Helpful Resources

Conclusion

Speaking of her own experience, an HIV+ woman offered these comments. "So far, I've never really had a problem with anyone I have disclosed to. It might be sheer luck, but I suspect that a lot of it has to do with my attitude. Among those I know in my "diagnosis cluster," some of us have the attitude, 'I'm HIV positive. It's a medical condition. I'm not going to let it affect you. I'm still the same person I was before HIV entered my life, and I'm proud to be that person.' ....The more we hide as positive people, the more people in general will think we have something to hide. The more they think we're ashamed of our status, the more they will think we SHOULD be ashamed. It's about being out and proud, not proud of being HIV positive per se, but being proud of who I am as a whole person, a small part of which is being HIV positive. We're HIV positive....and life goes on."

And just remember: the choice of who to tell is a personal decision. The choice and the right are yours.

Helpful Resources

Americans with Disabilities Act: Employment Information
(800) 669-4000

Americans with Disabilities Act: General Information and Assistance
(800) 514-0301
For questions about discrimination including in workplace.

Gay Men's Health Crisis (GMHC)
http://www.gmhc.org
(212) 807 6655 (Hotline)
Wide range of legal and support services related to issues of HIV discrimination, employment, and immigration.

Lambda Legal Defense and Education Fund
http://www.lambdalegal.org
Services related to issues of HIV discrimination, employment, and immigration. Telephone numbers available on website for areas throughout United States.

National AIDS Hotline
(800) 342 2437 (English)
(800) 344 7432 (Spanish)
To learn about HIV/AIDS resources in your area, call the 24-hour national hotline.


Last Revised: June 27, 2012

This content is written by the POZ and AIDSmeds editorial team. For more information, please visit our "About Us" page.

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