Preparing for Disclosure
Disclosure means telling someone that you are HIV+. Sharing your HIV status can help with the stresses of living with HIV. But who to tell and how to tell can be complicated and difficult decisions.
There is no one best way to tell someone, just as there is no sure way to know how they will react to your news or whom they may choose to tell. To prepare, it may help to ask yourself a few questions:
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 I tell?
Consider where you want the disclosure to take place. It could be at home, at a friend’s house, or in a health care setting so that support is readily available. The important thing is that you choose a place that is comfortable for you.
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 process. If you have not told any family yet, turn to your health care provider, social worker, counselor, or AIDS service organization (ASO).
Disclosing your HIV status will also have an effect on the 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.
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 the addresses of websites that provide information (a good government site is at http://aids.gov/hiv-aids-basics/). 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+. However, it is important that you tell your current and past sexual partners and anyone you have shared needles with to inject drugs. This way they can be tested and seek medical attention if required. If you are afraid or embarrassed to tell them yourself, the health department in your area can notify your sexual or needle-sharing partners without even using your name.
You also need to tell your health care providers to ensure you receive appropriate care. Your health care provider may ask 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 (STDs) for women infected through sex.
Disclosure and Relationships
Serious Relationship
If you are in a serious relationship, telling your partner is one of the first things you will probably think about. Many turn to their partners for comfort and support. However, some people may worry that they will lose their partner’s love when they disclose. It’s normal to feel nervous, embarrassed, or even fearful of your partner’s reaction.
Since you and your partner most likely have a sexually relationship, you do need to let them know that they may have been exposed to HIV and should get tested. Also, you now need to think about practicing safer sex.
Disclosing your HIV status can put a strain on the best of relationships. It's important for you to think about when and how to disclose, but keeping the information to yourself for too long is probably not a good idea. It may be helpful to getting some professional counseling.
Be aware that women are at risk for violence when disclosing their HIV status. If you are worried that your partner may become violent, think about having the discussion with another person you trust present: a therapist, an HIV advocate, or a health care professional.
Dating
Women who are dating have to face the question of disclosure with each new relationship. Some women prefer to get the issue out into the open immediately. Others prefer to wait and see if the relationship is going to develop beyond casual dating.
Although many people know about safer sex and how HIV is transmitted, fear and stigma are still a reality. Your HIV status will prevent some from wanting to see you, while others will not be put off by the information.
In most cases, sharing your HIV status is a personal choice, but in the case of sexual relationships, it can be a legal requirement. It is best if you disclose your status prior to having sex with anyone new.
Non disclosure of HIV status in a sexual relationship can lead to criminal charges whether or not your partner becomes infected with HIV. 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. In many states, you can be found guilty of a felony for not telling a sexual partner you are HIV+ before having intimate contact.
Who Does Not Need to Know
People with disabilities, including HIV, are protected from job discrimination under the Americans with Disabilities Act (ADA). However, you should think carefully before disclosing your HIV status at work. You do not have to tell your employer that you are HIV+. If you haven't had any HIV-related symptoms or illnesses and are not on medications that are affecting your job performance, there's probably no need tell.
If HIV or your medications are interfering with your ability to work, it may be a good idea to privately disclose your status to your boss. You can ask for an adjustment in your schedule or workload so that you can continue to do your job. Because the law regards an HIV+ person as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of the job.
If you are planning to disclose at work for employee or benefits purposes (like reasonable accommodation, insurance, disability, or medical leave), contact an employee benefits counselor or an HIV or legal advocate before disclosing.
Who You May Want to Tell
Women often choose to disclose their status to close friends and family members who they trust. 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 the government or in the 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.
Taking Care of Yourself
There are many reasons to tell people that you have HIV:
Getting support from family and friends, at the time of diagnosis and in the future
Fostering a sense of closeness with friends and loved ones
Reducing the risk of HIV transmission to others
Not having to live with the stress of keeping HIV a secret
Ensuring that you get the most appropriate care and treatment from your health care providers
Disclosing can feel empowering
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.
However, telling other people that you have HIV can also have downsides. So think carefully about who you tell. Remember that once you disclose, you cannot take it back. ASOs and health care clinics can offer resources to guide women through the disclosure process.
Information provided on this blog 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. I recommend all medical decisions be made in consultation with your personal health care provider.
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