What my grandmother’s death taught me about black women and the stigma of HIV

The last words my grandmother said to me before she left this world were: “Put your socks on” and “I love you.” I followed her instructions without hesitation, knowing that her words carried the weight of the law. Raised by her from birth, I had the honor of being raised by a girl of unwavering strength and pride. Her no-nonsense attitude and unflappable spirit left an enduring impression on me, instilling in me a desire to emulate her resilience. Throughout our time together, she taught countless lessons, but none were more profound than those who emerged after her death.

My grandmother’s battle with HIV clearly exposed the insidious nature of stigma to 14-year-old me. Despite five years of ordeal full of doctor visits and misdiagnoses, the true cause of her symptoms remained elusive. Only a fall and a broken arm revealed the true state of her health: she had been living with HIV for years. Unfortunately, the diagnosis was made too late, and she died lower than six weeks after receiving it, at the age of 69, weighing only 71 kilos, falling right into a coma. As I kept vigil at her side, alongside her hospice nurse, she witnessed the devastating impact of HIV stigma visible in every labored breath she took.

Reflecting on my grandmother’s experiences, I’m struck by the profound impact of stigma, discrimination, racism, and systemic health disparities on her premature death. Her death is a poignant reminder of the many systems that failed her, ultimately resulting in her preventable death. If the health care provider had simply asked about her HIV test status, she might still be with us. Instead, I witnessed years of medical enlightenment as her illness was wrongly attributed to alcoholism, which further deepened her suffering.

As the days drew closer to her death, my grandmother’s health continued to deteriorate. I started to tackle intimate caregiving tasks: changing diapers, helping with bathing, and feeding the woman who had cared for me since birth. With her health deteriorating, I got here down with a chilly and was unable to be in close contact together with her as a result of her weakened immune system. When I finally managed to reconnect together with her, I leaned in to kiss her brow, a gesture of love and affection ingrained in our relationship. To my surprise, she expressed gratitude for my care, though she suffers from “this disease.” In that moving moment, I spotted the profound impact the stigma of HIV/AIDS had on her self-esteem. My grandmother, known for her honesty, couldn’t even pronounce the name of the disease that ravaged her body, a testament to the pervasive influence of stigma and its role in stripping her of her dignity in the final days of her life.

The glaring disparities in HIV infection rates amongst Black women underscore the urgent need for targeted interventions and equitable access to health care resources. Despite making up a smaller share of the population, black women bear a disproportionate burden of HIV disease, with rates much higher than white and Latino women.

The latest data from the CDC paints a disturbing picture: While the overall rate of HIV infections amongst black women stays regular, disparities in the number of recent HIV infections persist and, in some cases, are widening. This stark inequality highlights the inadequacy of current prevention efforts to effectively goal and meet the specific needs of Black women.

A key obstacle is the lack of tailored HIV prevention campaigns and health care messaging initiatives that reflect the experiences and realities of Black women. Despite advances in HIV prevention and treatment, these initiatives often overlook the complex intersectional aspects that contribute to Black women’s increased vulnerability to HIV infection, including systemic racism, misogyny, homophobia, transphobia, and socioeconomic disparities. Addressing these challenges is critical to successfully combating HIV amongst Black women and improving health equity in our communities.

Although significant progress has been made in reducing infection and mortality rates over the past 4 many years, the belief that “HIV is no longer a death sentence” is usually invoked to combat stigma. However, for a lot of Black women living with HIV, like my grandmother, this statement doesn’t reflect their reality. Social stigmas and systemic inequities persist, presenting significant challenges for Black women with HIV. These people often face barriers to accessing quality health care, face discrimination in health care settings, and struggle with social isolation as a result of pervasive misconceptions and stigma surrounding HIV. As a result, the virus stays a serious and potentially life-threatening problem for a lot of Black women, underscoring the ongoing need for comprehensive support, advocacy, and education to handle the complex challenges of HIV/AIDS in marginalized communities.

After my grandmother’s death, I discovered solace in the areas of sexual and reproductive health, rights, and advocating for justice. Turning my grief right into a catalyst for motion, I set out on a journey to honor her memory by promoting awareness and fighting for equal access to health care. While I could not change the course of my grandmother’s life, my mission is to make sure that her narrative empowers and protects others, especially Black people battling HIV. Through my advocacy efforts, I even have gained deep insight into the intricate web of HIV stigma and have had the honor of working with passionate and strong Black HIV advocates and activists. Together we attempt to dismantle barriers, challenge stereotypes and cultivate a more inclusive and supportive environment for all people affected by HIV/AIDS.

If I could give a message to my grandmother or any Black woman living with HIV, she would echo the heartfelt phrase: “You are loved, protected, and worthy of tender care.” This statement is of great importance, especially on National Women and Girls with HIV/AIDS Day, since it highlights the critical need for awareness, empathy and proactive health practices in our communities.

On this necessary occasion, it will be significant to not only offer words of support, but in addition take concrete steps toward empowerment and advocacy. By promoting regular testing, spreading knowledge about HIV/AIDS prevention, and ensuring equitable access to health care services, we will make significant progress in improving public health and well-being. Through collective efforts and removing systemic barriers, we affirm the inherent value and dignity of one and all affected by HIV/AIDS, especially Black women who face unique obstacles and stigma. Reproductive justice values ​​emphasize bodily autonomy, access to comprehensive health care, and the right to make informed decisions about one’s body and health. For Black women living with HIV, these values ​​are essential to their well-being and dignity.

This journey towards collective empowerment and health equity requires ongoing commitment and motion. By strengthening awareness initiatives and creating inclusive spaces of dialogue and support, we honor the resilience and strength of people affected by HIV/AIDS. Together we will create a future where one and all receives the respect, care and resources they deserve, regardless of whether or not they are HIV positive. It is a journey marked by compassion, solidarity and hope – a journey that honors the legacy of those we’ve got lost and elevates the voices of those that tirelessly advocate for justice and equality in the fight against HIV/AIDS.