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Disclosure and Living with HIV By Chris Wade, Program Coordinator/ADAP Enrollment Specialist, IPHA

If you are worried about telling people who you have HIV, you’re not alone. For many people living with HIV, particularly when they have just been diagnosed, telling other people is one of their main concerns.

Sharing the news of your diagnosis (also called disclosure) with your partner, a close friend or family member and talking about your feelings can be really helpful, and your friends and family may be a good source of support.

Unfortunately, in many communities, there is stigma attached to HIV, and it may be that some of the people you know do not really understand what it means to have HIV. They may not understand how it is passed on, be afraid, or judgmental.

It is up to you to decide who you tell. You may find it helpful to talk to a healthcare professional, or a peer support group, first.

Who should I tell?

It’s up to you to decide who you tell. You may decide you want to be completely open about your HIV status, or you may decide to only tell a small number of people close to you – it’s your choice.

You don’t have to decide right away. Take your time to take in the news that you have HIV.

Who you tell will also depend on your situation, and the relationships you have with people. Because HIV can be passed on during sex, telling someone who is a current or previous sexual partner can be particularly difficult and emotional.

Depending on where you live, there may be some legal issues you have to consider. Talk to your doctor or someone in a HIV organization about the situation where you live.

Often people have concerns about telling their employer, or immigration authorities. Again, this will depend on where you live.

Benefits and Challenges

It can be helpful to think about what kind of reaction you might expect from someone you are considering telling. Do you think they will be calm and supportive? Are they likely to get upset and worried for you? Is there a chance they could be angry, or even violent?

Talking to a healthcare professional/case manager, or a support group or organization, can help you to think about the kind of reaction you are expecting and how you might handle it. In some situations, it might be possible for someone to be with you when you disclose.

While it is important to consider the negative reactions that some people sadly do experience, it’s also really important to remember that many people have good experiences of disclosing their HIV status.

Being able to be open and honest with someone about your HIV status and your feelings can be really powerful. It can make you feel closer to the person, and they may offer you emotional and practical support when you need it.

How do I tell people?

It’s worth thinking about how you will tell someone. It can help to have some information on hand to share with them. They may not know about how HIV is passed on, or about HIV treatment. They may assume that you don’t have long to live, or that you won’t be able to have relationships or have a family. If you can help them to understand the facts about HIV, they may be less likely to react negatively.

It’s a good idea to find a time when you are unlikely to be interrupted, you don’t have to rush the conversation, and talk in a setting where it’s quiet and you can sit comfortably together. Give them time to process what you’re saying, and attempt to ensure that they understand.

How do I talk to my children about HIV?

It can be difficult to decide how much information to give children about HIV. Every child is different, and every parent is different, so there isn’t necessarily a ‘right’ way to tell your child that they, and/or you have HIV.

Often, telling a child that they have HIV is done over time, giving them information at the level they can understand, depending on their age. Children will often have questions about why they are taking treatment, or why they have to see their doctor, and this can present opportunities to give information and offer reassurance.

Talking to other parents and a healthcare professional at your child’s clinic can help you think about what you might like to do and when.

For more information on confidential HIV services across IL (HIV Prevention/Education and HIV clinical care, Medication or Premium Assistance) in your area, visit:

Chris Wade, Program Coordinator/ADAP Enrollment Specialist, Illinois Public Health Association – HIV Care Connect, or (309) 453-9042 confidential cell

HIV Care Connect is a program of the Illinois Public Health Association and is funded by the Illinois Department of Public Health