Family, Friends and HIV - It Takes a Village

Submitted on Jun 8, 2019 by  ConnieLJohnson

"Family isn't always blood. It's the people in your life who want you in theirs. The ones who accept you for who you are. The ones who would do anything to see you smile, and who love you no matter what." Unknown

In 2002, I sat in an office no bigger than my bathroom across the desk from a short, pale balding man whose job it was to inform me that my HIV test results came back positive. "You've got it." he declared. "Got what?" I responded. During a testing drive three weeks earlier, I was tested for several STIs. "Prepare for the worst and hope for the best" was the advice given by the best friend, Shana. She was the first person I called when the health department demanded that I come into the office to discuss my results. Immediately, my head began to spin with possibilities. The best case scenario was that I had contracted one of the many STIs that were treatable and curable. The worst case scenario was that I had contracted the same virus that had taken my mother's life seven years earlier.

"I'm afraid you've tested positive for HIV. From what we can tell, it's been in your bloodstream for about ten years and has progressed to AIDS," the bald man continued. Ten years earlier, I was a sixteen year old who naively associated sex with love and had been raped twice. On the day I was diagnosed, I was a twenty-six year old dean's listed Sociology major and after-school teacher.

By that evening, I resolved to share the news with my family. I picked up the phone and called my sister, brother, aunt and father and explained to them what I had been told. Each time I uttered the phrase, "I have AIDS," the reality of it became that much more terrifying. At the office, in the midst of my tears, I vowed to myself that I wouldn't suffer in silence and solitude like my mother did. By the time she told her family she was sick, they were planning her funeral. Something in me knew that if I was going to survive this thing, I couldn't do it alone. I needed a village.

My family responded to my diagnosis better than I expected. I was especially concerned about my sister's response. After losing our mother, I wasn't sure how the news would affect her. She took it hard, like I expected. But what I didn't expect was the unwavering support of her then boyfriend, now husband of ten years, Jason. My aunt and father responded by asking questions that I didn't have the answers to. They wanted the logistics of my next steps and offered their prayers. My younger brother, PJ, listened intently as I explained to him what I had been told. "How are you?" he responded. No one had asked me that yet. In that moment, he gave me the space to verbally process the swirl of emotions growing inside of me. With one question and a listening ear, he helped me make sense of this new information.

The bald man suggested that I contact a local AIDS organization that hosted weekly support groups and offered other services. It took a few months but eventually, I joined a women's support group. There, I met Deidre, a short, hippy woman with a thick New York accent who freely verbalized her thoughts. Every week a group of about eight women gathered in a conference room and spoke openly about their experiences of living with HIV. They were mothers, sister, aunts, grandmothers and friends who bonded over one common thread, HIV/AIDS. While they talked, cried, laughed and cursed, I sat in silence trying not to be seen. There were a few times when the women tried to make me talk. "She'll talk when she's ready! Leave her alone," Deidre barked. They left me alone. It took a few months before I was ready. When I finally spoke, the women cried with me and wrapped their arms around me. I called those women my "blood sisters." They are powerful, courageous women who didn't allow their HIV status to define them and continue to defy the meager expectations set on them by a society that often sees us as less than desirable. Over the past seventeen years, I have attended numerous trainings, workshops and conferences and have been introduced to hundreds of "blood sisters" from all walks of life and every corner of the globe. Many of them have become an integral part of my village offering support and comfort. They speak their truth, walk in love and inspire me to do the same.

In October 2004, I joined a church. I hadn't attended church since my mother's funeral. I spent the better part of the seven years after her death angry with God. But everything in me knew that if I was going to survive AIDS, I needed help from a Higher power. I was invited to the church by a woman who interviewed me for a volunteer opportunity at an after school program. She had taken a special interest in me and became a mentor of sorts. After a few months, I disclosed my status to her. "I don't know what it's like to have AIDS, but I do know, I serve a God that can do anything. If you trust in Him, He will see you through this," she encouraged. I believed her enough to continue going to church where I learned more about this God she confidently told me about.

I struggled with becoming and remaining med compliant. Taking meds was a daily reminder that I had the same incurable illness that killed my mother. As a result, my health declined. My CD4 plunged to 3 and my viral load soared beyond 150,000. I became severely ill and was hospitalized. My family visited me in the hospital. My sister and brother looked at me with tears in their eyes. I could see the devastation of possibility losing me in their eyes. One night while in the hospital, I prayed and told God, "If you raise me from this sickness, I’ll do whatever you want me to do." Some might call this kind of prayer bargaining but I believe God heard me that night. I was released a couple days later, started taking meds and began getting stronger. I went to the doctor a few months later and for the first time since I had been diagnosed, I had an undetectable viral load. I praised God and cried on the spot.

The following Sunday, I hesitantly rose from my seat during the testimony portion of the weekly Sunday evening service at church. I stood at the microphone, opened my mouth and spoke my truth publicly for the first time. I told the church about my mother and how I had been diagnosed and hospitalized. I told them about how difficult the journey had been but that God had seen me through and blessed me to have an undetectable viral load. Before I could finish, the church erupted with praise and thanksgiving on my behalf. After service, a young man simply slid his hand in mine as a gesture of support and acceptance. Many others embraced me and showed their kindness in ways I wasn't expecting. The older women brought me food every Sunday or invited me to their homes for Sunday dinner. The men cared for me like I was their daughter or little sister offering to take care of my car maintenance, offering advice and helping me financially. The entire church wrapped their arms around me, giving me the strength and courage I needed to share my story publicly.

In 2009, I was invited to be the keynote speaker for a World AIDS Day event at a church near my hometown in rural South Carolina. As I drove into the church yard, I saw my name on the marquee in bold black letters. I couldn't believe I was there to actually tell my story to a roomful of strangers. When the time arrived, I walked up to the podium and spoke from my heart. Some of the audience members cried as I spoke. After the service, several people came up to speak to me. Some of them just wanted to say thank you while others told me of their family members who were also living with or had passed away from AIDS. One woman was a reporter from the local newspaper. She asked for my permission to write a story about me. I agreed and told her to call me the next day for an interview. Instead of hearing from the reporter, I received a phone call from my aunt saying that my story was in the paper as part of a special World AIDS Day tribute. I was shocked and stunned. I scrambled to contact my sister to warn her that the story was public. I didn't feel ready to be exposed so broadly. Most of the people in my community had no clue I was positive or that my mother died of AIDS. I worried about the potential backlash and criticism. But what happened next shocked me. I received messages on social media, texts and phone calls from former teachers, classmates, community members and former church members expressing how proud they were of me for telling my truth. Their words and positive reaction gave me the confidence I needed to continue telling story.

Since that keynote address in 2009, I have spoken in front of hundreds of audiences across the country. I have traveled to Kenya twice to work with women living with HIV. I have written a book about those Kenyan women whose bravery inspires me. I have developed a curriculum and facilitated workshops for other women living with HIV. I have planned numerous World AIDS Day and National Women and Girls HIV AIDS Awareness Day events. And I have started a nonprofit organization that addresses the many social, political and economic factors that contribute to the elevated rates of HIV/AIDS rates among women in the rural South and other issues.

None of this would be possible without the village of friends, family, blood sisters, former and current church members, co-workers, classmates and acquaintances that have cheered me on from the sidelines from the moment I was diagnosed. I have been blessed with a community of people who celebrate with me when things are going well and hold me up when they aren't. I realize that there are so many people living with HIV/AIDS who can't say the same. My hope is that every person living with HIV/AIDS discovers their village because I don't think I could have ever survived without mine.

Submitted by Beautifulb

This is what I needed. I have been dealing with this alone for the last 4 years. I am now reaching out because I need to find a womans group that I can attend for love, support, information and knowledge but I do not know where to start. I have no one to talk to, I have been holding in 4 years. If you would not mind giving me some suggestions and advice on looking into any woman groups I would appreciate it.

Thank you in advance 


I feel like it is time and if I do not get some help soon I am not sure where I am going to end up. I need support!!

Submitted by ConnieLJohnson

I am so proud of you for reaching out to get the support you need. It's not easy to do. I would suggest that you contact HIV/AIDS organizations in your area as well as a caseworker. They should be able to direct you to a support group. I pray that you find your village.

Submitted by Giberson9

I have been dealing with my diagnosis alone for about 5 years.I have looked online and can't seem to find any womans support in my area. I just found the well project a few days ago with the hopes it will help me. Your story sounds so brave and i can't imagine being able to say out loud my story to anyone.

Submitted by The Well Project

We're glad you found us - and we're confident you will find some of the support you're looking for here. Welcome!

Submitted by Lovinglife101


I am glad you found us and hope you feel safe sharing with us.  This year I will celebrate 35 years of living with an HIV diagnosis. I have lived my entire adult life with HIV and do not know any other way to live.  For many years, I engaged in self-destructive behaviors for through The Well Project and other women living with HIV I have learned to love myself and help support others in their journey.

I hope you find some comfort in the stories here; the women are amazing.  They are my rock, my guideposts, and my soft pillow to fall on.  Glad you are here.



Submitted by MariaHIVMejia




hello sister and welcome to our sister hood ! You are not alone and if you need anything iou can reach me on Facebook  Maria HIV Mejia ! Continue coming here and reading our blogs because they will empower you and not let you feel alone !! I also have a huge international support group in Facebook that is private if you wish to join 

Much love and light 

María Mejía 



Submitted by Lovinglife101

Although I have known you for a few years, I never knew your story and I am so glad you shared it here.  Thank you for sharing your journey, pain, fears, and hopes.  Your words are strong will help to support others by shining a light on the path ahead.

I am grateful you are a part of our village.  Love you.


Submitted by Memz

I have been a hermit.. only going to work and coming straight home.. I don't go out I don't socialize I don't do anything anymore. I haven't even spoke to anybody else whose positive until now. I believe I might be in the stigma but i found this website just I guess trying to each out and I'm amazed. I'm what you've done here is nothing less then amazing and i believe it may even save lives .. thank you. Thank you so much.

Submitted by kmartel

Hi Memz, I'm really glad you found us too---thank you for writing. There is an amazing community here and so many experiences shared. Let us know if you are looking for any specific information or community support. 

ConnieLJohnson 's recent blog posts


Members of The Well Project community at USCHA 2022.

Become a Member

Join our community and become a member to find support and connect to other women living with HIV.

Join now >


Do you get our newsletter?

¿Recibe nuestro boletín?

Sign up for our monthly Newsletter and get the latest info in your inbox.

Suscríbase a nuestro boletín mensual y reciba la información más reciente en su bandeja de entrada.

Browse Blogs by Theme

Recent Blog Posts

Our Bloggers