This post originally appeared on and can be read in its entirety at The Well Project.

By Connie L. Johnson

The day my mother announced that she had been diagnosed with AIDS, my entire world shifted. Through tear-filled eyes, she explained that she contracted the illness from her recently deceased ex-fiance and wasn’t sure how much longer she had to live. I instantly wailed as if she was already gone. At the time, I was a 17-year-old high school senior filled with the anticipation that accompanies graduation and college plans. When my wailing ended, a different conversation began. My mother reached under her bed, retrieved a thick, evergreen book, and began thumbing through the pages. She landed on “autoimmune illnesses”. Her mission: search her medical dictionary until she found a kinder, gentler illness that resembled AIDS. “If anyone asks, I have Lupus. You understand me?” “Yes ma’am,” my sister and I agreed. This was our story and we were committed to sticking to it. June 1994, I went away to college. By some minor miracle, my mother scraped up enough money for me to attend DeVry in Atlanta. I returned home at the end of my first trimester to a mother I no longer recognized. In three short months, she dwindled from a plump, vivacious Brickhouse to an unrecognizable shell of herself. By January 1995, she was gone.

My sister and I held on to our mother’s secret. As requested, we explained her death with the Lupus story. Small towns are known for being hubs of misinformation. For years, various stories floated around the community about my mother’s mysterious death. Some said she had a heart attack. Others said it was cancer. I’m unsure about the origins of these stories. But I do know nothing but truth could reel them in. Truth was not an option.

Fall 2001, I enrolled in college after three failed attempts to earn a degree, hoping to bring honor to my mother’s legacy. I made the Dean’s list, started working in after-school care, and had my own apartment. At 25, I felt like I was finally living a life my mother could be proud of. The following Spring, an HIV/AIDS testing van invaded my campus with prizes and pamphlets. I was tested and later diagnosed with AIDS. Again, I wailed. The thought of having the same illness I watched destroy my mother was unbearable. When the wailing ended, I made a decision. I decided that if I was going to die, I wasn’t going to die silently. I immediately called my closest family and friends. That day, I discovered why my mother created that story about having Lupus. The truth of AIDS stung my tongue every time I spoke it. But with every sting, I eventually became immune to its venom. Continue reading…

The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls. Visit their website, https://www.thewellproject.org/, to access fact sheets (English and Spanish), blogs, and advocacy tools, and to join a global community of women living with HIV.