Talking About Being HIV-Positive

Telling someone that you're HIV-positive is rarely easy. But it's an important conversation to have. Disclosing can relieve the burden of keeping a secret, plus you'll hopefully add to your support system. It may actually improve your overall health.

Still, "This is a very personal disease and no one needs to know everything," says Guy Anthony, who is HIV-positive. "You own your narratives; you own your body."

"Disclosure is a case-by-case situation," says Kevin V. Anderson, community outreach and education coordinator at AIDS Foundation Houston. "It looks different to someone you're dating over family and friends."

It's been different every time for Ken Williams. "Having lived a public life with my diagnosis since 2011, I still get jitters before disclosing to someone," he says. "Stigma is fueled a lot by ignorance, and the more I have been able to explain the condition of HIV to someone that I'm disclosing to, the more comfortable they are."

Being prepared for the big talk can make the process much easier.

Why Should You Tell People?

In general, people with HIV are legally required to tell others if there's a chance they could be exposed to the virus. This includes, for example, someone you have sex with or share a needle with. If you don't, you can expect criminal penalties. (The rules vary from state to state, and there are a few federal regulations, too.)

Aside from that, "Whether you disclose your status to anyone or not is your choice," Anthony says. "Tell the people that you think really care."

"Especially with your family and friends, it shouldn't be a secret," Anderson says, because hiding the fact that you're HIV-positive from those who love you is a way of buying into the idea that it's something to be ashamed of. "As people are more open and free with their HIV status and able to find trusted individuals, it empowers them and builds their own safety around the stigma."

Anthony had another reason to tell his loved ones. "I have respect for my family and didn't want them to find out from anyone else," he says. His mother admired and appreciated him much more because he told her. "People will be extremely hurt if they don't hear it from you first."

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When Should You Say Something?

Many states and cities have partner notification laws, so make sure you let a potential sexual or needle-sharing partner know ahead of time. When it comes to past sexual partners, if you no longer have a relationship with them, it can be easier -- and safer -- to notify them anonymously through a hospital or service.

In other situations, it depends.

"I'm a huge mental health proponent and recommend going to a therapist, doctor, or faith organization -- wherever you can get healing in -- because people need to take stock of their emotions before they tell anyone," Anthony says.

He didn't speak about his positive status for about 5 years because "I wanted to be OK enough with myself so that if I met any discourse, if people judged me or family members disowned me, I would be strong enough -- because that can break a spirit."

Before you open up to someone, ask yourself:

  • What does being HIV-positive mean to me?
  • Why is now the right time to tell them about my status?
  • How much do I trust myself to confide in them?
  • Will sharing my status put me at physical, mental, legal, financial, or emotional risk?
  • Do I fully understand my condition?

Ultimately, you'll know you're ready to talk about it when you've accepted your HIV status and are comfortable with it.

Find a Safe Place and Time

This shouldn't be a spur-of-the-moment conversation. "It should be pretty planned out," Anderson says.

Choose a quiet place where you can speak freely. "You shouldn't be in a club or heavy social environment," he says. "A safe space is one of the more important things." You want to be somewhere you can really talk, because you can't know for sure how it's going to go.

He continues, "After you sit the person down, let him or her know you have something you need to discuss." Try to get a sense of how much they know about HIV and how they feel about people with it, "and then from there, disclose fast. I don't think anything dramatic should happen. It should be a moment of safety and trust."

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A one-on-one, in-person interaction is usually the best way to go. That's often a more controlled and intimate setting. "There are cues in body language that are unmatched when having an in-person dialogue that get missed or misconstrued via any other medium," Williams says.

But if that's not an option, have the conversation however is most comfortable for you, he says. "Again, think: How do you want your truth to be shared and handled? Figuring that out will lead you to the best possible way to disclose."

Choose Your Words

"I truly believe the more of a big deal that you make it, the more of a big deal it will be for the individual hearing your words," says Anthony "By trying to normalize it, it will make it more normal for the person that's receiving the information." That's why it's so important to have a handle on your own emotions as well as self-acceptance.

Williams recommends leading with honesty. Think back to your reasons for disclosing and why you're telling this person. "Allow yourself to share as much information as feels comfortable," he says.

You may need to play an educational role, too. "It's important to understand if they ask questions, don't make up information -- have a source," Anderson says. "Make sure you have resources on hand that you can provide. Or at least have a point of contact."

He's worked with people who've brought in their partners or family members to sit with him while the person tells them about their status. If you want that kind of support, ask your doctor for a referral or look for a trusted professional in the field.

Prepare for Any Reaction

"Everyone will react differently, and sometimes they'll react differently than you'll expect," Williams says. "The best medicine for preparing others is being well prepared yourself."

Sadly, not all reactions will be positive. "Everyone will not be on your team after you disclose, and that's just a fact," says Anthony. "You will lose friends, you will not be able to date everyone, people will not be able to see past your HIV status to see your heart -- and you have to know that that's OK."

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"Most fear regarding HIV is fueled by ignorance," Williams says. When you're able to answer questions and explain what HIV means -- that you're not an urgent threat to anyone, or that with treatment you can live a long and healthy life -- "You will be surprised at how people are willing to engage further in the conversation and relax a bit more around the subject."

Anthony suggests you "continue to build yourself up and surround yourself with people who love you for you, and not your status."

It helps to remember that any shame, disgrace, or reputation around HIV that you might run into isn't really about you, Anderson says. You are the same person that you were before your diagnosis.

WebMD Feature Reviewed by Melinda Ratini, DO, MS on August 05, 2016

Sources

SOURCES:

AIDS.gov: "Do You Have to Tell?" "Legal Disclosure."

Ken Williams, Houston.

Guy Anthony, Washington, DC.

Kevin V. Anderson, community outreach and education coordinator, AIDS Foundation Houston.

Women's Health.gov: "Telling people you are HIV-positive."

CDC: "HIV-Specific Criminal Laws."

AVERT.org: "Being young and positive."

AIDS Action Committee.

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