Disclosure of HIV Status

Disclosure of HIV Status

Whenever you are HIV positive and you decide to tell someone that you have HIV, then you are disclosing your status.

Preparing for Disclosure

When you share your status of HIV, it can help to deal with all the stress of being HIV positive. However, whenever you decide to tell someone and how you tell them can be hard and very complicated.

There isn’t a single best way to tell someone about your status. There is no way for you to know how someone will react or if they may tell someone else. In order to prepare for something like this, it could help to ask yourself these questions:

  • Who do I want to tell?
  • Why do I want this person to know?
  • How much am I ready to share with them?
  • How much are they ready to hear?
  • How will disclosing my status affect those around me?
  • How will disclosing my status affect me?

You will also need to consider where you want to tell this person. It could be done at home, your friends house, or even in a healthcare setting so that there is support that will be available. The main thing is that you find somewhere where you will be comfortable for you.

How Disclosure Can Affect Others and You

When you disclose your status, it can be really stressful. While you may get support and love from some of those that you tell, others may not be as accepting. You need to find someone who is willing to support you through a difficult process. If you have not told any friends or family yet, then talk to your health care provider, counselor, social worker, or even the AIDS service organization. If you need to find the closest ASO, then check this site here. In order to locate services globally, when check out the e-atlas from AIDSmap.

When you disclose your status, it can affect those that you tell. There are some who may have different reactions to this news. Your family and friends may automatically embrace you and accept your diagnosis and want to help you to get through this time. Although, others may have a negative reaction, or they could need time to fully process this information. They could be scared for you or for themselves, or they may just need some information and a bit of time to fully adjust.

There are going to be some people that you tell, especially if they are your sexual partner who could be afraid that they have gotten HIV, that react with anger. If you ever feel unsafe or threatened, then it is important that you find somewhere safe and stay safe. Do not hesitate to call the National Domestic Violence Hotline.

Just like you, the people that you tell are going to need support. Do not hesitate and leave them hotline numbers, books, and brochures about HIV that they can look at. Give them addresses of websites that can provide more information about HIV such as www.hiv.org/hiv-basics. Be sure to let them know who else knows about your status, so that they can be there to support each other.

Who Needs to Know About Your Status?

You don’t have to tell every person that you know about your HIV status. It could be seen as being vital enough that you should tell any past and current sexual partners or people that you may have shared needles with. This allows them to go and get tested and seek medication attention if they need it. If you are embarrassed or afraid to tell them yourself, then your local health department can notify your needle sharing or sexual partners without ever using your name.

You also will need to disclose your HIV status with any health care providers to make sure that you are going to receive the right type of care. Your healthcare provider may in turn ask questions in order to see if you may have a risk for developing other diseases, like sexually transmitted diseases or infections and even hepatitis C.

Relationships and Disclosure

When it comes to disclosing your status, it is going to be a very personal choice. When it comes to sexual relationships, it is seen as being a legal requirement. Whether your partner becomes HIV positive or not, and whether prevention methods are used or not, or the person who has HIV meant any harm, then they could face criminal charges if a partner states that they did not disclose their HIV status during a sexual relationship.

There are many states that will require you to disclose your HIV status before you knowingly transmit or expose any one to HIV. The penalties will vary based on the state. In most states, you could be found guilty and charged with a felony if your sexual partner decides to bring charges against you for not telling them that you have HIV before having any type of intimate contact.

These laws are seen as unfair for a lot of reasons. It is hard to prove disclosure, and a lot of people who have HIV, especially women, are often taken to court by sexual partners who claim that they did not disclose when they state that they did. For another reasons, a person who did not have any intent to do harm, and yet the punishment for conviction is always so much worse than what was actually done to the person who is charging the HIV positive person.

However, these laws exist. In order to find information about disclosing within your state, check out this map that was provided by the CDC. If you want to learn how you can protect yourself from being charged with nondisclosure of HIV, check out this brochure from the Sero Project. According to UNAIDS, there are over 60 countries which have laws that will penalize people who have HIV who do not disclose their status before having sex. If you want to know more about these laws outside of the US, then check out the AIDSmap to find more information about that country’s laws about HIV disclosure.

Serious Relationships

If you happen to be a serious relationship, then telling your partner is going to be one of the first things that you will start to think about. Most will turn to their partners for support and comfort. Yet, there are some who will think about if they will lose the love of their partner when they tell them that they have HIV. It is very normal for someone to feel embarrassed, fearful or nervous about the reaction from your partner.

Since you may be having a sexual relationship with your partner, then it is very important that you both practice safer sex. If you have been having sex without condoms or Treatment as Prevention methods, then you may need to explain that they have been exposed to HIV, and that they should go and get tested. You will need to remember to feel free to share with your partner that after a lot of research and evidence that people who are diagnosed with HIV and is taking HIV medications and has a undetectable viral load or is virally suppressed, cannot transmit the HIV infection to their sexual partners.

When you disclose your status, it could start to put a strain on your relationship. It is vital that you think about how and when you need to disclose. However, if you keep this information to yourself for too long, then it is not a very good idea. If you are finding it hard to decide how and when you should tell your partner, then maybe it might be wise to see professional counseling.

It is smart to recognize that some people may react to learning about an HIV positive status with anger and sometimes violence. If you ever worried that your partner could become violent, then you should try to reduce the risk of violence:

  • Avoid exposing anyone to HIV. You can do this by letting them know your status before meeting. You can be at risk for violence if someone believes that you lied to them or put them at risk knowingly.
  • Meet that person in a public place until you feel safe.
  • Consider taking a friend or family member or a health care provider to disclose your status.
  • Disclose your status in a somewhat public area like a park with people around. Locate an area that is private enough to have a conversation, but public enough to get help if you need to have it. Keep in mind that you need to ensure that you are in a position to have an access out of what space that you have picked. This could mean that you make sure that the person who is learning about your status is not blocking your exit.

Dating

People who are dating will often have to face the option of disclosure with every new relationship. Some people will often just cut to the chase and get it out in the air immediately. Others may wait to see if the relationship will develop beyond casual dating.

However, most people know about safer sex and how the transmission of HIV happens, the stigma and fear are still very much a part of reality. Your HIV status may prevent a person from wanting to see you while others will not have an issue with you being HIV positive.

Who May Not Need to Know About Your Status?

Inside of the United States, people who have disabilities, which include people with HIV are protected from any type of job discrimination under the ADA or Americans with Disabilities Act. However, you will need to think very carefully before you decide to tell your status at work. You do not have to tell your employer that you are HIV positive. If you have not had any type of HIV related symptoms or illness and you are not on medications that can affect the performance of your job, then you do not have to tell them.

Although, if your medications or HIV are starting to interfere with your ability to work, then it may be a good idea for you to privately disclose your HIV status to your boss. You can ask for adjustments in your schedules, or workload so that you may continue to work. The law states that a person who is HIV positive is considered disabled, so your job is required to accommodate any of your needs if you are qualified to perform all of the essential duties of the job.

If you have planned to disclose your status at work for benefits or employee purposes such as medical leave, disability, insurance, or reasonable accommodation, be sure to contact an Legal or HIV advocate or an employee benefits counselor before you disclose your status.

Who You Want To Tell?

A lot of people may want to disclose their HIV status to their family and close friends that they trust. For a lot of people, telling those who are closest to them helps to provide them with practical and emotional support.

There are some who will decide to be much more public with the information and use their stories to help advocate for others in the media or with the government. Some may choose to disclose for educational purposes to religious groups, the community, neighbors, healthcare providers, schools and others who are HIV positive. A lot of people will often find a sense of true purpose and notice and increase of self-esteem whenever they tell their story.

Take time and consider who you are wanting to tell and just how much of your story that you want to tell. Some people will ask you how you ended up with HIV. If you decide not to tell that information, you can have a reply ready such as, why does that matter. Or you can just state that you are not ready to talk about that part yet.

Disclosing Your Status to Your Children

If you are a parent who is wanting to tell your children that you are HIV positive, you need to ask why you want to tell your children about your status:

  • Are you sick?
  • Will your child be angry if it is kept a secret?
  • Do they suspect that you are hiding something?

Children may react much differently from an adult when hearing that someone is HIV positive, and this can be done in many ways. Older children can be upset that it was kept a secret while younger kids may just want to go back and play with their toys. The fact is that partial truths can also be really helpful whenever you are discussing your status to children. You can even decide only to tell them what you may consider as being right for their age.

It is very important that you keep in mind that kids will need support as well. If you are able to, give them the name of another adult that they can talk to such as a friend or family member that they trust. There are also books that are out there that can help when it comes to disclosing your HIV status to children.

Taking Care of Yourself

There are a few really good reasons that you should tell someone that you have HIV:

  • You can feel empowered after disclosing your status.
  • It can ensure that you get the right type of care and the right treatment from your healthcare provider.
  • You don’t have to deal with all the stress from keeping your HIV status a secret.
  • You are reducing your risk of HIV transmission to other people.
  • You are creating a closeness with your loved one and friends.
  • You can get support from your friends and family when you are diagnosed and in the future.

Although, telling people that you have HIV can have a few downsides. It is really important that you think very carefully about who you decide to tell your HIV status to. Remember, once you discuss your status, you are not able to take it back. Healthcare clinics and ASOs can provide you with resources that can help you through your disclosure process.

In a close relationship, studies have shown that when you live with a secret like having HIV, it can be very emotionally harmful when compared to the rejection that can come from disclosing your status. Most people who have kept this a secret for a long time, often will feel a huge sense of relief once they tell at least a single person about their HIV status.

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  • Centers for Disease Control and Prevention. (2020). HIV and STD Criminalization Laws. Retrieved August 2021
  • HIV.gov. (2017). Limits on Confidentiality. Retrieved August 2021
  • The Well Project. (2021). Disclosure and HIV. Retrieved August 2021
  • The Center for HIV Law and Policy. (n.d.). Confidentiality and Disclosure. Retrieved August 2021
  • NAM. (2020). Pros and Cons of Disclosing Your HIV Status. Retrieved August 2021
  • ASHM. (n.d.). Safe Behaviours and Disclosure. Retrieved August 2021
  • AIDS2020. (2020). HIV Disclosure: Benefits, Challenges and Behaviors. Retrieved August 2021
  • Lambda Legal. (n.d.). Privacy, Confidentiality and Disclosure. Retrieved August 2021
  • The OHTN Rapid Response Service. (2013). Disclosure of HIV-Positive Status. Retrieved August 2021
  • POZ. (2020). Disclosing You Are HIV Positive. Retrieved August 2021

Written by Mark Riegel, MD

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