by Shari Margolese
Disclosure means telling someone that you are HIV+. Who to tell about your HIV status and how to tell them is a complex and personal decision. While disclosure is never easy, it may help to plan ahead so that you are able to disclose under the best possible conditions.
You do not have to tell everyone that you are HIV+. You should tell people that you may have exposed to HIV so that they can be tested and seek medical attention if required.
These people could be sexual contacts or people with whom you have shared needles. If you do not want to tell them yourself, the Department of Health can inform your contacts without even using your name.
In the U.S., about 27 states have a law that requires you disclose your HIV status before knowingly exposing or transmitting HIV to someone else. Penalties vary from state to state. (For more information, go to: http://www.lambdalegal.org/cgi-bin/iowa/documents/record?record=361).
You need to tell your doctors and other healthcare providers to ensure you receive appropriate care. It will help your doctor to know how you were infected to determine if you are at risk for other diseases, such as hepatitis C for injection drug users and other sexually transmitted diseases for women infected through sex.
Women often choose to disclose their status to close friends and family. For many, telling those closest to them provides them with both emotional and practical support.
Some people decide to become more public and use their stories to advocate for others with government or media. Others may disclose for educational purposes to neighbors, community and religious groups, schools, other HIV+ people, or healthcare providers. Many women find a sense of purpose and increased self-esteem by telling their story.
You do not have to tell your employer that you are HIV+. If you do tell, remember that, as long as you are performing your job your employer cannot legally discriminate against you. In the U.S., people with disabilities, including HIV, are protected from job discrimination under the Americans with Disabilities Act (ADA).
Knowing how to start the discussion can be difficult. Try to practice first so you will feel more confident when the time comes. Here are some “opening lines” you may want to try:
There is something important that I want to talk to you about.
You may have noticed that I have not been well lately.
Have you heard about HIV?
I trust you and I want to share a secret with you.
Perhaps you have noticed I have had a lot of doctors’ appointments.
Have you ever been tested for HIV?
Consider how much of your story you are ready to tell. Many people will ask you how you became infected. If you decide not to share that information, have a reply ready such as, “does it really matter?” or simply state that you are not ready to talk about that.
Disclosing your HIV status will have an affect on the person or people you tell. People will react differently to the news. Your friends and family may immediately embrace you and accept your diagnosis. Others may react negatively or need some time to process what you have told them and to overcome fears or preconceived notions they have about HIV.
The person you are telling may not know much about HIV. Try to learn as much as you can so that you can be a resource. You can bring along booklets and brochures with basic information about HIV for the person to look at later. Give telephone numbers of support groups in the area. Also, let the person know who else is aware of your status, so that they can go to each other for support.
Try to pick a place that is going to be comfortable for you and the person you are disclosing to. It could be at home, at a friend’s house, or in a healthcare setting so that support is readily available.
Although there is generally no one right time, you should tell when you feel ready or when you are legally required to do so. (For example, if you are going to be involved in an activity where HIV could be transmitted.)
Some people think it is a good idea to tell before you get sick so that you have the support that you need from family and friends in place.
Children can react to the news of HIV in the family in many different ways. Older kids may be upset that you kept a secret from them. Younger children may just want to go back to their toys.
Partial truths can be helpful when telling children. You may decide only to tell them as much as you consider appropriate for their age. The information that you give them today is just the first step. They will want more information as they get older or as they process what you have already told them.
Don’t forget that kids need support too. If you can, give them the name of another adult they can talk to, perhaps an aunt or grandparent.
Women who are dating find it difficult to know when to disclose. Should you tell on the first date or only if the relationship is getting serious? While there is no correct answer, the longer you wait, the more difficult it becomes.
Be aware that women are at risk for violence when disclosing their HIV status, especially pregnant women. If you know that your partner has a history of violence, you need to be particularly careful in planning your disclosure. Here are some tips on how to protect yourself from a potentially dangerous disclosure:
- Avoid drugs and alcohol before you disclose.
- Consider having a neutral third party present such as a therapist, an HIV advocate, or a health professional.
- Pick a private corner in a public place for your disclosure.
- Wherever you decide to disclose, know how to get help and how to get out.
- You may want to tell before you become intimate.
In close relationships, studies show that living with a secret, such as HIV, can be more emotionally harmful than the rejection that could result from disclosure.
Many women who have kept a secret for a long time feel a sense of relief after telling. Community based organizations and AIDS clinics can offer resources and support to guide women through the disclosure process.
Gielen, A.C. and others. (1997). Women's disclosure of HIV status: experiences of mistreatment and violence in an urban setting. Women Health 25(3) :19-31.
Schmidt, C.K. and Goggin, K. (2002). Disclosure patterns among HIV+ women. American Clinical Laboratory March 2002: 40-43. Retrieved July 2005 from http://www.iscpubs.com/articles/acl/c0203sch.pdf