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How to Tell Someone You Have HIV

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Katie Willingham - Blogs - HIV
By Katie WillinghamJuly 20, 2021

You've just been diagnosed with HIV, and every thought you can imagine has been through your mind. Undoubtedly, one of those thoughts is -- how do you tell someone that you have HIV?

Some health issues can be difficult to talk about: Transparency creates vulnerability, and vulnerability requires trust. For people who live with HIV, trust is usually cautiously rationed -- and for good reason.

Before considering disclosing your status, there are some things you need to understand about the unfortunate realities of HIV stigma.

For most people, just hearing those letters -- HIV -- gives us chills. And why wouldn't it, when the first image they conjure in our minds is death? That reflex/default reaction is based on an antiquated understanding of the virus and no longer has any bearing on truth. But it still affects people living with HIV because too many people don't know the facts about the modern science of the disease.

When I was diagnosed with HIV, I thought I was dying, so I didn't think the stigma would have much effect on my life. I was wrong on both points. I told everyone about my diagnosis; I thought transparency was the right thing to do. I wasn't prepared for what would happen next. People I had known for years disavowed me; family and friends avoided me; even some in my church asked that I not return.

Though it hurt, I think I handled all of this remarkably well -- but the stigma didn't end with me. The real pain came when my neighbors refused to let their children play with mine and made it a point to ensure everyone at my children's school knew my diagnosis as well. For this reason alone, I regretted ever revealing my status, but that's a genie you can't put back in the bottle. My children lived with bullying for years, yet never even told me, nor blamed me, nor showed me anything but love and support. I love them so much.

People can be cruel and completely apathetic to what you're going through. They'll question your life decisions and judge your character for contracting a sexually transmitted disease; they'll fear you, blame you, discriminate against you, and even criminalize you.

Even receiving health care can be a challenge sometimes because, believe it or not, not all doctors and nurses are knowledgeable about HIV, either. Fortunately, I own my home because people who live with HIV often struggle to find housing due solely to their health condition. Employment and intimate relationships can be hard to find for the same reason. For these and other reasons, many people diagnosed with HIV choose not to reveal their status.

Now let me tell you something else you need to know.

The ignorance of others isn't your fault nor your responsibility, and no one has any rights to your personal life or medical information unless you choose to tell them. It’s a good idea to spend some time with your diagnosis, learning as much as you can about the science and treatment options, and getting support from trusted friends, family members, or partners or from other people with HIV (through a support group or a network of people living with HIV, like Positive Women’s Network -- USA, The Well Project, or a multitude of Facebook groups), before rushing to share your status publicly or in a high-stakes situation, such as to your employer (or a potential employer).

That being said, when you’re ready, there's something very empowering about being open with your HIV status. I have found that being open about my status is very liberating and empowers me to control the narrative. I don't have to live with the heavy burden of a secret or be at the mercy of those who would start rumors about me or disclose my status without my consent.

It allows me to more freely help others and be a visible example of what it's really like to live with HIV. It also allows me to build strong, honest relationships, knowing that those in my life truly care for me as I am. This freedom is healthy, as it reduces stress and anxiety, which promotes improved mental, emotional, and even physical health outcomes.

Now that you know these things, we come back to our original question: How do you tell someone that you have HIV?

Remember, this isn’t easy news for anyone to hear, especially for those who love you. Most people don't know the truth about this disease, so fear is unnecessarily heightened. Be gentle, caring, and ready to educate. They need to know that you will be OK; that you're not going to die, and your life can go on largely as normal -- that you’ll live a long, productive, and dignified life.

It might be a good idea to print out some fact sheets to have on hand as you talk to your loved ones: visual facts can be comforting. Some people have even invited family or partners to their doctor's office with them, so they're not alone and the doctor is there to answer any questions. In the case of romantic or sexual partners, it's also a good way to document that you did in fact inform them. This is important, because many states have criminal consequences for non-disclosure to sexual partners.

It's also important to be aware that some intimate partners have been known to react violently when they learn about a partner's positive status, so it could be a good idea to consider talking to them in a public place or with others (like a trusted friend or family member or care provider) around. Use your best judgment and caution if you suspect even a possibility of violence from anyone!

I'm not trying to scare you, but I don't want to fail to make you aware of certain realities that, for many of us, come with living with HIV. Sharing your status is a very personal decision. It can be freeing, empowering, and even healing. But it has the potential to also lead to unintended consequences for you and your loved ones, and, in the worst-case scenarios, can even be dangerous. So know who you're talking to and always use your best judgment.

Remember that disclosure is a spectrum with no wrong answers, ranging from telling no one to literally wearing your diagnosis on a T-shirt. Many people living with HIV fall somewhere in between: close friends, family, and partners may know their status, but they don’t share that information with employers or others they aren’t close to and who don’t have a reason to know. All of these choices are acceptable -- and the choice is yours and yours alone to make.

Whatever you decide, whether to share your story or not, allow yourself the time and patience to first come to terms, yourself, with your new reality and educate yourself about it. The more you learn, the less you’ll fear, and you’ll see that life can still be fantastic even while living with HIV when you know all the facts.

Once you know this, you'll be better prepared to share your truth when you're ready, and because you stand confidently on the facts rather than myth and fear, people will be better prepared to receive it.



Photo Credit: fizkes via Getty Images

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About the Author
Katie Willingham

Katie Adsila Willingham is a woman of transgender experience from rural northwest Alabama. She has been living and thriving with HIV since 2000 and became an advocate in 2017. Willingham is a Community Advisory Board member and blogger for The Well Project’s A Girl Like Me, raises awareness of HIV issues with the Alabama Poz Life Facebook group, and is Alabama state lead for Positive Women's Network USA.

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