Though there has been some progress in the fight against HIV and AIDS, the situation is still a dire one for black America. The battle to eradicate the stigma that is attached to the illness continues to be an uphill one.

In the United States, African Americans represent approximately 13 percent of the U.S. population but accounted for an estimated 44 percent of new HIV infections in 2010, reports the Centers for Disease Control and Prevention. Additionally, African Americans accounted for 41 percent of people living with HIV infection in 2011. 

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These numbers are even more stark when it comes to black women.

According to the CDC, black women in the United States account for 66 percent of all new HIV cases among women, despite representing only 13 percent of the U.S. female population. To get a clearer picture of how critical those numbers are by comparison, white women in the United States represent approximately 65 percent of the U.S. female population but make up only 17 percent of new HIV cases in the United States. Hispanic/Latino women represent approximately 15 percent of the U.S. female population and they represent 13 percent of new HIV cases.

AIDS-related illness is now the leading cause of death for black women in the United States between the ages of 25 and 34, and 1 in 30 black women in the United States will be diagnosed with HIV at some point in her life.

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The Black Women’s Health Imperative notes the “complex mix of economic, social, cultural, biological, environmental, and behavioral factors” that influence the rates of HIV and AIDS among black women. This includes, but is not limited to, nor specific to, the black community: shame surrounding sexuality, homophobia, poverty, limited access to quality health care, housing and sex education.

Black people in the United States also have higher mortality rates not only because of limited access to treatment but also because of later diagnoses (due to the factors above) and the inability to retain treatment even if initially obtained. Further, because religion plays such a pivotal role in the African-American community at large, and HIV is contracted primarily through sexual intercourse, the narrative for too many in the evangelical community becomes a moral litmus test, gauging one’s perceived “promiscuity” as rationalization for how one contracted the illness.

These stigmas, this idea that HIV and AIDS happen only to a certain kind of person, can create a fear of testing and the honest communication that plays a role in the transmission of the virus. We have yet to reach the point where HIV and AIDS are universally treated as a health crisis and not a morality crisis. Instead, many black women are left to navigate their diagnoses alone, afraid to draw society’s scorn.

This is why organizations like the National Black Women’s HIV/AIDS Network Inc. and the Red Pump Project are so critical. 

Luvvie Ajayi, executive director and co-founder of the Red Pump Project, a not-for-profit organization that raises awareness about the impact of HIV and AIDS on women and girls, has been tireless in her efforts to eradicate the stigma that surrounds HIV and AIDS.

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“Society teaches girls shame about our bodies and about being sexual beings,” Ajayi told The Root. “This is what the Red Pump Project is trying to get people to unlearn. The shame and stigma of HIV is literally killing us as we suffer in silence. Especially women of color, who are disproportionately affected. So we drive conversation and we remove the taboo of talking about it.

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“We bring women and girls into spaces to fellowship, tell their stories and learn from each other and health experts at our events and workshops,” Ajayi continued. “We empower women and girls by educating them on the facts, encouraging them to get tested and having sex that is safe.”

Today, World AIDS Day, we also recognize that HIV and AIDS aren’t just affecting black women in the United States. In South Africa, female sex workers and victims of gender-based violence are more likely to become infected with HIV than other women.

This is an illness that affects us all.

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The Root spoke to four women who agreed to share their stories with us. These women—Gail Graham, Twana Lawler, Melanie Carter and Melinda Gardner—are all living openly, courageously and unapologetically with HIV. Their stories are different, but their shared purpose is the same: to move the conversations out of the shadows where we can get past the moralizing of the irrational and uneducated about HIV and AIDS, and focus with compassion and determination on the cure.

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Melanie’s Story

I was 26 years old, the mother of one, divorced, a survivor of physical abuse and also a survivor of rape. On Dec. 30, 2010, I had just had a miscarriage seven days before, my doctor called me in for an unscheduled appointment that would change my life forever.

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I was diagnosed HIV-positive that day.

Many people would consider my story as some version of a movie. Two weeks after I was diagnosed HIV-positive, I found out that the man who infected me did it purposely. He had known his status for at least eight years before he met me. We were actually engaged to be married, but I also discovered that he was already married. Immediately following, I also was informed that the man {many of us thought} was his brother was actually the man he was in a relationship with. It was all a recipe for the ultimate betrayal.

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I was so distraught for the first month after my diagnosis, but then I realized I could either take this lying down and give up, or I could make a conscious decision to fight. So I began to fight. I realized I had a platform through my writing, poetry and performing spoken word to tell my story and possibly save lives, and that’s what I decided to do. I decided to be open and honest about my HIV-positive status.

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By the time I was two months into my positive diagnosis, I was completely open about my status. I shared my poetry and my story through every platform available to me: radio, churches, open mic and poetry venues and schools as well. This was also beyond important to me in my hometown. I am one of the only people open about my positive HIV status in the area in which I live.

The power behind it is that my story personalized the importance of those in my area protecting themselves and getting tested. It personalized it because I wasn’t some famous person in the media, nor was I some random face in a commercial. I was someone they grew up with or watched grow up. I could have easily been their mother, sister, brother, father or anyone close to them.

Now, although I was embraced by most people for being open about my status, I was not exempt from the negative stigma and ignorance that surrounds HIV and AIDS. I’ve been talked about. I’ve been called out of my name. I’ve had people in my home town, Jesup, Ga., tell me I got what I deserved or that I couldn’t use the restroom in their homes. I’ve had people try to publicly embarrass me by talking about my status in anger. I’ve been rejected in every way possible. Ironically though, the people that responded to me in a negative or ignorant way are a part of the reason I am open and honest. Being honest about my status opens a door for questions from other people. It gives me an opportunity to dispel some of the stigma surrounding HIV and AIDS.

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I’ve been HIV-positive for nearly five years (Dec. 30 is the anniversary), and I am finally in the process of getting put on medications. I finally have a group of people and a doctor that actually care about my well-being which is a relief within itself.

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I know everyone is not going to be like me. Everyone will not be in a position to be publicly open about their status, but getting tested is the important part. That is the only way to know. HIV or AIDS doesn’t have a specific “look” or respect for a particular person. Get tested to protect yourself and others. 

Melinda’s Story

My name is Melinda Reed-Gardner, I am 41 years old and I have been living with HIV for two-and-a-half years.

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My story is not the stereotypical one. I did not contract HIV because I lived a self-destructive lifestyle. I did not use drugs, I did not sleep around, I was not the recipient of a blood transfusion; nor did my mother have HIV or AIDS. 

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Simply: My ex-husband was secretly sleeping with men while he was married to me.

June 28, 2013, is a date I will never forget. While in the hospital, I asked for an AIDS test. It came back positive. Luckily for me, my disease had not progressed to AIDS. When I left the hospital, I went to a facility that catered to people living with HIV and AIDS.

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My first heartbreak was informing my family and close friends of my diagnosis. My brothers were devastated. My sister who works in the health care field comforted me the most. My father, on the other hand, had a very different outlook. Everything was fine until I told my family in 2014 that I was coming home for Christmas. My siblings were quite excited because they had not seen me in a few years; my father was very upset. He told me that I shouldn’t come to Georgia and spread my disease to his grandchildren, and that if I came, I was not welcome at his home. Although painful, I have not spoken to him since.

My best friend stopped talking to me for a few months. I felt completely abandoned and alone. The facility that I lived in had no one like me there. Although it was for all persons living with AIDS and HIV, there were no women there. I searched online for local support groups for women … there were none. I started volunteering at a clothes closet for people with HIV and AIDS. I found that the women there were very reserved in the things that they would share with me. I had lots of questions and no one to answer them. I was very angry and lonely and I did not know what to do with those feelings.

In January 2015, I decided that instead of wallowing in self-pity, I would try to make it so that no woman would have to go through this journey alone. It started with a blog that simply told my story. I did not expect anything to become of it. It was for my own personal healing. Since that time, I have become an active member of the Kentuckiana AIDS Alliance and I am working with others in the community to start a support group for women, which held its first meeting on Nov. 30, 2015. I work daily to dispel the stigma associated with people living with this disease. My mess has become my message.

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Editor’s note: Read more about Melinda’s journey at her blog: the Truth About Women and HIV.

Twana’s Story

“Your HIV test was positive.”

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The day I heard these words I went into profound denial. I was abstinent and had been for 10 years when I received my diagnosis. A long time before this frightening news, I had different things that were preventing me from advancing in my life.

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I was 15 when I gave birth to my first child. After dealing with my father’s suicide, my mother’s seeming ability to move on quickly and my subsequent rebellion, I thought a newborn child would love me. I got married at the young age of 16. I gave birth to another child at 17 and after that, the abuse started. My husband would hit me in the eye if he thought I was looking at other men. He would take the phones when he went to work and treat the windows so that he was able to verify that I was not looking out them while he was gone. I finally left him, but entered into another oppressive relationship. When I was 21, I was sexually assaulted.

I eventually moved on from him, got a good job and began dating a man who at first appeared to be the perfect man. But he date-raped me and allowed his best friend to touch me and have sex with me while I was asleep. Until this day, I believe I was drugged. Years later, I needed a hysterectomy. In my bed post-op, I cried out to God to take the pain away. I heard a whisper that I was going to be all right; I was going to be OK.

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This was the beginning of me writing screenplays, stage plays and poetry, but the HIV diagnosis that came soon after stripped my joy away. I once again began feeling ill and this time, the doctor told me I was HIV-positive. Another physician confirmed that diagnosis a week later. I was shocked considering how long I had been celibate. How had I survived 10 years? I knew it was a minister, a man I had been intimate with over a decade ago, who infected me with the virus.

My daughters had to take care of me. I could not bathe myself, wash my hair, or brush my teeth and I was in a wheelchair. My doctors told me I had two weeks to live, but with the love of God and my daughters, I came back. I did not die! 

I was 50 when I was diagnosed with HIV; I was eventually told that I had full-blown AIDS and dementia. Three years later, at the age of 53, I was told that my viral load was virtually undetectable. I am now 54, and a few weeks ago I was told that my viral load will be zero by my next doctor’s visit. The disease is not showing in my blood. Though doctors told me to expect death, today I am still here and I’m healthy and happier than ever.  

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Now I go on speaking engagements and I’m traveling to Africa in 2016. And I continue to tell my story in hopes that I can be an inspiration to other women.

Gail’s Story

When I was first diagnosed at the age of 30, I lost a lot of friends due to their ignorance and unwillingness to learn. I helped perpetuate the stigma myself because I didn’t want anything I did to be thrown back at me if someone I was close to became infected. I knew how the virus spread and had all the logistics in my head, but when other people were around I would use paper cups and refuse to let others drink behind me. I would not use the bathroom at someone’s home without them knowing my status. I was sure others’ ignorance would have them saying they later became infected by drinking behind me or saying they wished they knew because they would have bleached everything behind me.

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Even with those precautions, people still voiced and did exactly what I thought.  

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I was starting a new relationship when I was diagnosed, and the person became verbally abusive, telling me no one would want to be with my “diseased ass,” so I should be glad they were there. After breaking out of that, I didn’t put myself in the dating sphere for some years for fear of rejection. When I was ready to start dating again, I told people up front what my status was. Some never called back, but a lot thanked me for telling them. They asked questions to educate themselves and some I dated; others became good friends.

Today the dating pool is crazy. When I date another positive, they want to have unprotected sex thinking it’s OK if we both have it, not factoring in that we could reinfect each other and create a stronger strand of HIV that would be drug-resistant. When I meet and/or date negatives, they are very interested in learning how safe sex can be more erotic than not.

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The stigma is still strong today in churches. Very few churches will talk about HIV and AIDS for fear that people will mistake talking about it as acceptance for homosexuality or promiscuity, more prevailing stigmas attached HIV. I’ve heard people ask if the baptismal pool is cleaned after a person with HIV or AIDS is baptized. “Make them go last,” they say, “then bleach the pool.”

People don’t want to talk about it or have it at their place of worship. I’ve tried through the HIV/AIDS ministry we started at my church. Few churches wanted to partner with us.  

I am now 49 years old. Stigma is just as strong now if not more than when I was first diagnosed. Currently, I’m on one HIV medication that I take once a day. This is a big difference from what I was taking when I was first diagnosed. Then I was on AZT, which made me sick and barely able to function. I had to take this medication every four hours—even at night. No matter where I was, I had to discreetly take it on time.

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I stopped taking AZT because I couldn’t handle the side effects. Since then I’ve been on numerous medications. Here’s a brief list: Atripla, Combivir, Epivir, Sustiva, Retrovir, Truvada, Viread, Zerit, Crixivan, Norvir, Reyataz and Viracept. All of these medications all had their own particular side effects (e.g., nausea, sleep issues, diarrhea, kidney failure, liver failure, high blood pressure). 

Still, here I am, living my life. Hopefully I can help eradicate some of the shame women feel and let them know they are not alone.

Editor’s note: Read more stories from women living with HIV or AIDS at the Red Pump Project and the Women’s Collective.