No two conversations are the same. When it comes to sharing an HIV diagnosis with family, friends, and other loved ones, everyone handles it differently.

It’s a conversation that doesn’t happen just once. Living with HIV can bring ongoing discussions with family and friends. The people closest to you may want to ask new details about your physical and mental well-being. That means you need to navigate how much you want to share.

On the flip side, you may want to talk about the challenges and successes in your life with HIV. If your loved ones don’t ask, will you choose to share anyway? It’s up to you to decide how to open up and share those aspects of your life. What works for one person may not feel right for another.

No matter what happens, remember that you’re not alone. Many walk this path every day, including me. I reached out to four of the most amazing advocates I know to learn more about their experiences, too. Here, I present our stories about talking to family, friends, and even strangers about living with HIV.

Guy Anthony

Age

32

Living with HIV

Guy has been living with HIV for 13 years, and it’s been 11 years since his diagnosis.

Gender pronouns

He/him/his

On starting the conversation with loved ones about living with HIV:

I’ll never forget the day I finally spoke the words, “I am living with HIV” to my mother. Time froze, but somehow my lips kept moving. We both held the phone in silence, for what felt like forever, but had only been 30 seconds. Her response, through tears was, “You’re still my son, and I will always love you.”

I had been writing my first book about living vibrantly with HIV and I wanted to tell her first before the book was sent to the printer. I felt she deserved to hear of my HIV diagnosis from me, as opposed to a family member or some stranger. After that day, and that conversation, I have never shied away from having authority over my narrative.

What’s the conversation about HIV like today?

Surprisingly, my mother and I rarely talk about my serostatus. Initially, I remember being frustrated at the fact that she, or anyone else in my family, never asked me about what my life has been like living with HIV. I am the only person living openly with HIV in our family. I wanted so desperately to talk about my new life. I felt like the invisible son.

What’s changed?

Now, I don’t sweat having the conversation so much. I realized that the best way to educate anyone about what it truly feels like living with this disease is to live BOLDLY and TRANSPARENTLY. I am so secure with myself and how I live my life that I am always willing to lead by example. Perfection is the enemy of progress and I am unafraid of being imperfect.

Kahlib Barton-Garcon

Age

27

Living with HIV

Kahlib has been living with HIV for 6 years.

Gender pronouns

He/she/they

On starting the conversation with loved ones about living with HIV:

Initially, I actually chose not to share my status with my family. It was about three years before I told anyone. I grew up in Texas, in an environment that didn’t really foster sharing that type of information, so I assumed it would be best for me to deal with my status alone.

After holding my status very close to my heart for three years, I made the decision to share it publicly via Facebook. So my family’s first time learning about my status was through a video at the exact time that everyone else in my life found out.

What’s the conversation about HIV like today?

I feel that my family made the choice to accept me and left it at that. They have never pried or asked me about what it’s like to live with HIV. On one hand, I appreciate them for continuing to treat me the same. On the other, I do wish there was more investment in my life personally, but my family views me as a “strong person.”

I view my status as an opportunity and a threat. It’s an opportunity because it has given me newfound purpose in life. I have a commitment to seeing all people garner access to care and comprehensive education. My status can be a threat because I have to take care of myself; the way I value my life today is beyond what I ever had before being diagnosed.

What’s changed?

I have become more open in time. At this point in my life, I couldn’t care less about how people feel about me or my status. I want to be a motivator for people to get into care, and for me that means I have to be open and honest.

Jennifer Vaughan

Age

48

Living with HIV

Jennifer has been living with HIV for five years. She was diagnosed in 2016, but discovered later that she had contracted it in 2013.

Gender pronouns

She/her/hers

On starting the conversation with loved ones about living with HIV:

Since many family members knew I had been sick for weeks, they were all waiting to hear what it was, once I had an answer. We were concerned about cancer, lupus, meningitis, and rheumatoid arthritis.

When the results came back positive for HIV, although I was in complete shock, I never thought twice about telling everyone what it was. There was some relief in having an answer and moving forward with treatment, compared to having no idea what was causing my symptoms.

Honestly, the words came out before I sat back and gave it any thought. Looking back, I’m glad I didn’t keep it a secret. It would have eaten at me 24/7.

What’s the conversation about HIV like today?

I’m very comfortable using the word HIV when I bring it up around my family. I don’t say it in hushed tones, even in public.

I want people to hear me and listen in, but I’m also careful to not embarrass my family members either. Most often this would be my children. I respect their anonymity with my condition. I know they aren’t ashamed of me, but the stigma should never be their burden.

HIV is now brought up more in terms of my advocacy work than about living with the condition myself. From time to time I will see my ex-in-laws and they will say, “You look really good,” with emphasis on “good.” And I can tell immediately that they still don’t understand what it is.

In those circumstances, I probably steer away from correcting them for fear of making them uncomfortable. I typically feel satisfied enough that they continually see I’m well. I think that holds some weight in itself.

What’s changed?

I know some of my older family members don’t ask me about it. I’m never sure if this is because they feel uncomfortable talking about HIV or if it’s because they don’t really think about it when they see me. I would like to think that my ability to talk publicly about it would welcome any questions they may have, so I sometimes wonder if they just don’t think about it much anymore. That’s OK, too.

I’m quite certain my kids, boyfriend, and I reference HIV on a daily basis because of my advocacy work — again, not because it’s in me. We talk about it like we talk about what we want to get at the store.

It’s just part of our lives now. We’ve normalized it so much that the word fear is no longer in the equation.

Daniel G. Garza

Age

47

Living with HIV

Daniel has been living with HIV for 18 years.

Gender pronouns

He/him/his

On starting the conversation with loved ones about living with HIV:

In September 2000, I was hospitalized for several symptoms: bronchitis, stomach infection, and TB, among other issues. My family was in the hospital with me when the doctor came into the room to give me my HIV diagnosis.

My T-cells at the time were 108, so my diagnosis was AIDS. My family didn’t know much about it, and for that matter, neither did I.

They thought I was going to die. I didn’t think I was ready. My big concerns were, is my hair going to grow back and will I be able to walk? My hair was falling out. I’m really vain about my hair.

Over time I learned more about HIV and AIDS, and I was able to teach my family. Here we are today.

What’s the conversation about HIV like today?

About 6 months after my diagnosis I started volunteering at a local agency. I would go and fill condom packets. We got a request from the community college to be part of their health fair. We were going to set up a table and hand out condoms and information.

The agency is in South Texas, a small city called McAllen. Conversations about sex, sexuality, and especially HIV are taboo. None of the staff was available to attend, but we wanted to have a presence. The director asked if I was interested in attending. This would be my first time speaking in public about HIV.

I went, talked about safe sex, prevention, and testing. It was not as easy as I expected, but over the course of the day, it became less stressful to talk about. I was able to share my story and that started my healing process.

Today I go to high schools, colleges, and universities, in Orange County, California. Talking to students, the story has grown over the years. It includes cancer, stomas, depression, and other challenges. Again, here we are today.

What’s changed?

My family isn’t concerned about HIV anymore. They know that I know how to manage it. I’ve had a boyfriend for the last 7 years, and he’s very knowledgeable about the topic.

Cancer came in May 2015, and my colostomy in April 2016. After several years of being on antidepressants, I’m being weaned off of them.

I’ve become a national advocate and spokesperson for HIV and AIDS targeting education and prevention for young people. I’ve been part of several committees, councils, and boards. I’m more confident in myself than when I was first diagnosed.

I’ve lost my hair twice, during HIV and cancer. I’m a SAG actor, Reiki Master, and stand-up comic. And, again, here we are today.

Davina Conner

Age

48

Living with HIV

Davina has been living with HIV for 21 years.

Gender pronouns

She/her/hers

On starting the conversation with loved ones about living with HIV:

I didn’t hesitate at all to tell my loved ones. I was scared and I needed to let someone know, so I drove to the house of one of my sisters. I called her into her room and told her. Both of us then called my mom and my two other sisters to tell them.

My aunts, uncles, and all of my cousins know my status. I have never had a feeling that anyone felt uncomfortable with me after knowing.

What’s the conversation about HIV like today?

I talk about HIV every day when I can. I’ve been an advocate for four years now, and I feel it’s a must to talk about it. I talk about it on social media daily. I use my podcast to talk about it. I also talk to people in the community about HIV.

It’s important to let others know that HIV still exists. If many of us say we are advocates then it’s our duty to let people know that they must use protection, get tested, and look at everyone as if they’re diagnosed until they know otherwise.

What’s changed?

Things have changed a lot with time. First of all, the medication — antiretroviral therapy — has come a long way from 21 years ago. I don’t have to take 12 to 14 pills anymore. Now, I take one. And I don’t feel sick from the medication anymore.

Women are now able to have babies that are not born with HIV. The movement UequalsU, or U=U, is a game-changer. It’s helped so many people who are diagnosed to know that they are not infectious, which has freed them mentally.

I have become so vocal about living with HIV. And I know that by doing this, it has helped others to know that they can live with HIV, too.


Guy Anthony is a well-respected HIV/AIDS activist, community leader, and author. Diagnosed with HIV as a teen, Guy has dedicated his adult life to the pursuit of neutralizing local and global HIV/AIDS-related stigmatization. He released Pos(+)tively Beautiful: Affirmations, Advocacy & Advice on World AIDS Day in 2012. This collection of inspiring narratives, raw imagery, and affirming anecdotes has earned Guy much acclaim, including being named one of the top 100 HIV prevention leaders under 30 by POZ Magazine, one of the top 100 Black LGBTQ/SGL Emerging Leaders to Watch by National Black Justice Coalition, and one of DBQ Magazine’s LOUD 100 which happens to be the only LGBTQ list of 100 influential people of color. More recently, Guy was named one of the Top 35 Millennial Influencers by Next Big Thing Inc. and as one of six “Black Companies You Should know” by Ebony Magazine.