Revealing Your HIV Status

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• Revealing HIV Status
• Telling Your Kids
• Additional Information on Revealing Your HIV Status

If you have been diagnosed with HIV, you probably feel overwhelmed. There is a lot to think about. Questions may be going through your mind — such as how to get the health care you need? How will having HIV impact your life? How will your family and friends react?

One challenge you will face is deciding who to tell about your HIV status. You should talk to your current and past sexual partners about your HIV status or people who you shared needles with. If you cannot tell them yourself, the health department in your area can notify your contacts, without giving your name. You should also tell your doctors to get the care you need. You might also consider sharing your status with other people, such as family members, friends, and children.

Revealing HIV Status

Deciding who to share your status with is a very personal decision. It may be hard to know if telling certain people will bring good or bad consequences. You might fear negative responses like rejection, discrimination, abandonment, or isolation. You might worry about being judged or feel guilty about past drug use or sexual behavior. In some situations, revealing your status could put you at risk for physical harm. Since some people may not be as accepting of your HIV status, these are all valid issues to think about.

By opening up about your HIV status, you can get support, information, and acceptance. For example, you can talk to other women with HIV about your symptoms and fears or other issues like childcare and relationships. You can get emotional support, and you won't have the burden of keeping this secret. A support network can help you deal with the stresses of having HIV and help you to feel less lonely and isolated.

Taking these steps can help you figure out who to reveal your HIV status to.

1. Think about the people you rely on for support, like family, friends, or coworkers.
2. Figure out your relationship with each of these people and the advantages and disadvantages of telling them.
3. Determine any issues the person might have that will affect how much he or she can support you. For example, does the person have any health problems of her own? Can you trust her?
4. Look at the person's attitude and knowledge about HIV. Do they have fears or preconceived ideas about HIV?
5. Think about why you'd want to disclose to this person. What kind of support can this person provide?
6. For each person, decide if the person should be told now, later, or to wait and see.

(Julianne Serovich, PhD, Professor, Marriage and Family Therapy)

Deciding who to tell may take a short time or a long time. There is no right way to do this. It is a very personal decision that only you can make.

When you tell someone that you're HIV positive, they may also need support too. It may be helpful to give them information they can read; phone numbers for support groups; and contact information for other people in your support network they can talk to.

Telling Your Kids

A major concern for mothers with HIV is to decide if they will disclose their status to their kids and when and how they will do it. There are mixed opinions on how mothers should handle this difficult decision. Some studies show that open communication about the illness to their kids is better than not telling them. Children may already know something is wrong; keeping the illness a secret can confuse children and make them feel anxious. Other studies have found that children have negative reactions to being told, like behavior problems, sexual risk-taking behavior, and lower school performance. Several studies have shown that if a HIV positive mother reveals her status, telling a child to keep her health condition a secret is stressful for that child and as a result, that child may have behavior problems.

In one study, women with HIV who told their children about their illness were interviewed. The women recommend these tips for talking to your kids about your HIV status.

• Think about why you want to tell your children about your HIV status. Make sure you're ready and they're ready to listen.

• Educate yourself about HIV so you can talk to your children about the illness.

• Plan for what you're going to say to your children.

• Consider how healthy you are right now and how healthy you will be later. It might be better to talk to your child when you're feeling healthy and can show your child a healthy, positive attitude.

• Think about other things going on in the family. It may not be the best time to tell your child when there are other stresses in the family.

• After you tell your children, get them additional support. They could talk to a health professional who can talk more with your children about HIV.

Additional Information on Revealing Your HIV Status:

Publications

1.   Living With HIV/AIDS - This booklet is for people who are infected with the human immunodeficiency virus (HIV). HIV is the virus that causes the disease acquired immunodeficiency syndrome (AIDS). You might also want to share this booklet with your friends and family. It will help you, and them, understand more about HIV.

   http://www.cdc.gov/hiv/pubs/brochure/livingwithhiv.htm

2. Building a Cooperative Doctor/Patient Relationship (Copyright © Project Inform) - This guide is intended to help both parties establish reasonable expectations of each other and set up a climate of cooperation and joint responsibility for healing.

   http://www.projectinform.org/info/patient/index.shtml

3. Dating and HIV (Copyright © The Well Project) - This publication gives information on dating when you're HIV positive. It gives tips on talking to your partner or potential partner and other general tips for HIV positive women to consider when dating.

   http://www.thewellproject.org/Womens_Center/Dating_and_HIV.jsp

4. HIV & AIDS (Copyright © Kidshealth) - This guide for parents explains what HIV and AIDS are, the causes, signs and symptoms of infection, diagnosis, and contagiousness. Additional information is provided regarding opportunistic infections and other complications, treatment, long-term care of children with HIV/AIDS, prevention, and talking with your child about HIV and AIDS.

   http://kidshealth.org/parent/infections/std/hiv.html

5. HIV and Disclosure (Copyright © The Well Project) - This publication gives information on telling others about your HIV status. It discusses how to tell your children, who needs to know, and who doesn't.

   http://www.thewellproject.org/Womens_Center/HIV_and_Disclosure.jsp

6. Talking With Kids About HIV and AIDS (Copyright © KFF) - This step-by-step guide outlines what a parent should do to initiate conversation about HIV/AIDS, present facts, and clarify misunderstandings that their kids may have.

   http://www.talkingwithkids.org/aids.html

7. Telling others about your HIV (Copyright © Project Inform) - Telling others you’re living with HIV can be scary, painful and hard. In the long run, it’s usually not as hard as the heavy burden of secrecy. While there’s no one best way, there are a few things to think about in advance that might help.

   http://www.projectinform.org/info/disclose/index.shtml

Organizations

1.   CDC-INFO
2.   Division of Acquired Immunodeficiency Syndrome(DAIDS), NIAID, NIH, HHS
3.   National Institute of Allergy and Infectious Diseases, NIH, HHS
4. AIDS Community Research Initiative of America
5. AIDS InfoNet
6. Project Inform
7. Women Organized to Respond to Life-threatening Diseases (WORLD)

= Indicates Federal Resources

Content last updated January 25, 2008.