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HIV and Disclosure

by Shari Margolese
July 2003 (Reviewed May 2007)

Preparing for Disclosure

“Disclosure” means telling someone that you are HIV+. Who to tell about your HIV status and how to tell them can be a very complex and personal decision.

 

There is no one best way to tell someone, just as there is no sure way to gauge their reaction to your news. But it will help to ask yourself a few questions before disclosing:

 

  • Who do I want to tell and why do I want them to know?
  • How much am I ready to share or are they ready to hear?
  • How will disclosing my HIV status affect me and how will it affect the people around me?

 

Consider where you want the disclosure to take place. It could be at home, at a friend’s house, or in a healthcare setting so that support is readily available. The important thing is that you choose a place that is comfortable for you.

 

Consider when to tell. 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.


How Disclosure Affects You and Others

Disclosing your HIV status can be stressful. While you may receive love and support from some of the people you tell, others may not be as accepting. Try to find someone that can support you through this difficult time of telling. If you have not told any family yet, turn to your doctor, social worker, counselor, or community AIDS organization.

 

Disclosing your HIV status will also 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.

 

Just like you, people you tell will need support too! Try to leave them brochures or books about HIV that they can look at later. Give them telephone numbers of support groups in the area. Also let them know who else is aware of your status, so that they can go to each other for support.


Who Needs to Know

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 most states, the law requires that you disclose your HIV status before knowingly exposing or transmitting HIV to someone else. Penalties vary from state to state.

 

You need to tell your doctors and other healthcare providers to ensure you receive appropriate care. Your doctor also needs to know how you were infected to determine if are at risk for other diseases, such as hepatitis C for injection drug users and other sexually transmitted diseases for women infected through sex.


Who Does Not Need to Know

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. People with disabilities, including HIV, are protected from job discrimination under the Americans with Disabilities Act (ADA).


Who You May Want to Tell

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 may want to 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 to Children

For moms considering telling their children, it is important to ask yourself why you want to tell them:

 

  • Will they be angry if you keep a secret?
  • Do they suspect something?
  • Are you sick?

 

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.

 

Do not 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. Several books are available that deal with the issue of disclosure to children A good place to start is http://www.kidstalkaids.org/program/index.html


Disclosure and Relationships

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.

 

Non disclosure of HIV status in a sexual relationship can lead to criminal charges whether or not your partner becomes infected with HIV.

 

Be aware that women are at risk for violence when disclosing their HIV status, especially pregnant women. If you are worried that your partner may become violent, think about having the discussion with a neutral third party present: a therapist, an HIV advocate, or a health professional.

 

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 to guide women through the disclosure process.


1

Gielen, A.C., et.al. (1997). Women’s disclosure of HIV status: Experiences of mistreatment and violence in urban setting. Women’s Health 25(3). 19-31.

2

Lee, M.B. & Rotherman-Borus, M.J. (2002). Parents disclosure of HIV to their children. AIDS, 16(16). 2201-2207: Retrieved July 2003 from http://thebody.com/cdc/news_updates_archive/nov11_02/hiv_disclosure.html.

3

Margolese, S.L. (2002). Telling your story, how to decide: A skills-building workshop designed to increase involvement of people with HIV in education, advocacy, and prevention. XIV International AIDS Conference, Barcelona. Abs. TuPeF5496.

4

Schmidt, C.K. & Goggin, K. (2002). Disclosure patterns among HIV+ women. American Clinical Laboratory. 40-43: Retrieved July 2003 from http://www.iscpubs.com/articles/acl/c0203sch.pdf.

5

 

Maman,S & Medley ,World Health Organization 2004

Gender Dimensions of HIV Status Disclosure to Sexual Partners: Rates, Barriers and Outcomes A Review Paper

Retrieved May 2007 from www.who.int/gender/documents/en/genderdimensions.pdf

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Information provided on this website is for educational purposes only. It is designed to support, not replace, personal medical care and should never be used as a substitute for personal medical attention, diagnosis, or hands-on treatment. We recommend all medical decisions be made in consultation with your personal health care provider.