When a person finds out that they are HIV-positive it can be a very shocking experience. They may feel too ashamed, guilty or upset to tell anybody. They may be afraid of being rejected. They may not want people in their inner circle or community to know because they fear discrimination. To hide their HIV status, they could stop going to the clinic to get their treatment. While disclosure can be scary, disclosing to a trusted person, as early as possible, can be rewarding because of the benefits of love, acceptance and support.
The benefits of disclosing
It is a person's right and choice to decide whether they want to disclose their HIV status or not. It is not something that has to be rushed into but there are many benefits to disclosure. Disclosure is an important step in a person's acceptance of their status. Keeping it a secret makes it easier to pretend that it is not real and delay getting treatment.
- Not disclosing can be a lonely experience. Telling somebody will make it easier to cope with the illness.
- A person is more likely to adhere to ART and achieve viral suppression if they have a treatment buddy to support them and remind them to take their treatment or go to clinic appointments.
- If a person feels accepted and loved they are less likely to engage in risky behaviour that is harmful to others or themselves.
- If a person carries the burden on their own the stress can create physical symptoms like headaches, high blood pressure, trouble sleeping and tiredness.
How to disclose
Disclosure is a personal choice and often a difficult decision to make. Speaking to a counsellor at the clinic may be helpful, or using the five "W" questions as a guide:
- Who to tell
- What to tell them and what is the expected response
- When to tell them
- Where to tell them
- Why tell them
A person should think about how disclosing might affect them and the person they are telling. How a person reacts will depend on what kind of relationship they have. The person disclosing should be prepared to answer any questions or concerns the person they are telling might have.
Disclosing to a partner
Telling current or past partners about an HIV-positive test result can be particularly difficult and emotional. However, partners need to know that they could be at risk and should get tested. Disclosing to a current partner will also enable the couple to talk openly about having safe sex.
It is helpful to think about how a partner might react and what to say:
- If a person is in a loving relationship, it is likely that their partner will be concerned but will support them.
- It may take time for a partner to come to terms with the disclosure. They may react with anger, feel betrayed and be afraid that they might have the virus. The fact that their partner has been open and honest might bring them closer.
- If there is a chance that a partner might get violent, consult your healthcare worker. They will know how to deal with these challenges.
- It is important to talk about practising safe sex and using condoms. Condoms will stop HIV and STIs (sexually transmitted infections) from being passed on during sexual intercourse. Even if the partner is also HIV-positive, using condoms will prevent re-infection with a different strain of the HIV virus.
- A person should let their partner know that taking ART means they can become virally suppressed and that there will be very little chance of the virus being passed on.
If someone's partner rejects them because they are HIV-positive, they should not give up. They have done the right thing by disclosing. They will be able to have a loving relationship with somebody else.
Disclosing to family and friends
How family and friends react will depend on how much they know about HIV. If they do not know much, they may think that their loved one is going to die soon, or even that they may get HIV by living in the same house.
It is important that the person disclosing knows about HIV and can help friends and family understand the basic facts. You can also give family and friends information on HIV to read. You can find pamphlets at the clinic.
The person disclosing should:
- Keep it simple but not be afraid of showing how important it is to them.
- Let them know that HIV is not a death sentence.
- Tell them about ART and explain that viral suppression means that a person living with HIV will be able to live a full, healthy life and have HIV-negative children with passing the virus on to an HIV-negative partner.
- Explain that the virus cannot be passed on by sharing plates or cups, or hugging and kissing.
- Especially with friends, remind them that their HIV status is private and ask them not tell others.
- Let them know how much they need their love and support.
Telling HIV-positive children about their HIV status
Telling childrenthat they are living with HIV can be very hard. It is the responsibility of parents or primary caregivers to tell them that they are living with HIV. Getting help from a health care worker who has the tools and experience working with children can be very helpful.
Children under 10: Until a child is 10 years old, the focus should be on making sure that they understand that they have to take their treatment every day if to stay healthy. They should be encouraged to talk about what it means to them to be living with an illness. There is no need to name HIV until they are 10.
Children and adolescents older than 10: Once a child is ten or older, it becomes very important then that they know that they are living with HIV. They need to understand how it is passed on and how it can be managed. Adolescents go through body changes and may be experimenting with sex, so it is vital that they know how to practice safe sex, especially the importance of using condoms, which will prevent them from passing on the virus as well as getting STIs, or falling pregnant.
Adolescents often have trouble adhering to their treatment. It must be clearly communicated that they must take their medication correctly if they want to live a long and healthy life. They need to know that they can talk openly to their parents or caregivers and that they are there to support them.
A positive parent or caregiver disclosing to a child
There are many reasons why parents do not want to disclose their HIV status to their child or children. It may be because they feel shame or guilt, fear that their children will be angry, want to protect them from worrying that they are going to die, or are still struggling to accept their status themselves.
Specialists who work with children believe it is best to be honest with children because they have probably already sensed that something is wrong. They might worry less if they know more about the illness and that it can be managed.
Parents do not have to disclose everything to their child/children all at once. It is a slow process and may involve many conversations. If parents do not know how to begin the process, speaking to a healthcare provider or counsellor or other parents who have disclosed to their children can help. There is no right way but these are some questions a parent should ask when they prepare themselves:
- Am I ready to tell my child?
Parents have to first accept their own status before they can tell their child or children.
- How much am I going to tell my child?
The age of the child will affect how much to tell them and what to tell them. For example, it is best to tell a young child that a parent/caregiver is living with an illness but not say that they are living with HIV.
- How am I going to tell my child?
Parents should use language that is age appropriate. They should explain that ART will keep them healthy. Unless they are very sick, they should let the child know that they are not going to die soon.
- Do I want my child to keep this a secret?
Parents may want to protect their child from discrimination but expecting a child to keep a parent's HIV status a secret is too much of a burden. Parents should ask the child whether there is anybody they would like to talk to and share the information with.
Other situations where a person may be asked to disclose or want to disclose
There will be many situations where a person living with HIV will have to decide whether to disclose to people other than those close to them. It is helpful to ask the five 'W' questions as well as consider whether there could be legal consequences. These are some of the situations where people may be unsure about disclosing:
Medical insurance: People living with HIV have a right to medical insurance but if they do not disclose their HIV status when they sign up, they may not be paid out when they make claims. It is advisable to check before signing up whether there are special policies for people living with HIV.
Life insurance: Before giving a life insurance policy, some companies will ask people to take health tests, including an HIV test. But having HIV does not mean you will not be allowed to have a life insurance policy. Since people living with HIV are living longer lives, more companies are offering them life insurance. Finding out which companies these are will take away the concern about disclosing.
Medical appointments or procedures: Disclosure of HIV status to healthcare practitioners is not a legal requirement. They are expected to take their own precautions. However, in order to get the best medical care, it is best to give a healthcare practitioner your full medical history.
Applying for a job: Current or future employers are not allowed to demand to know the HIV status of an employee or discriminate against them based on their status. Even healthcare workers, such as nurses, do not have to disclose their status.
If a person living with HIV is unsure about whether they should disclose, they can call one of the helplines at the back of this flyer.
How to support somebody who discloses their HIV status
A person who is being disclosed to should:
- Be sensitive and kind.
- Not be judgemental. Feeling judged will lead to the person feeling shame. They may stop talking.
- Showing that they are not afraid of the other person's HIV status will make them relax.
- Reassure them that HIV is manageable and not a death sentence.
- If they are not on ART encourage them to get treatment so that they can live a healthy and full life.
- Offer them practical and emotional support.