Stigma against those living with HIV discouraged Dando’s cousin from seeking life-saving services.
Had she confided in me earlier, maybe I would have been able to help her.
Dando | Zambia
Those were the last words my late cousin spoke to me, said quietly over the phone.
Despite her deteriorating health, my cousin was jovial and friendly. She loved her family and could always bring us together. She was in her early 40s and had one child at the time of her passing. Indeed, she was more than a cousin—she was my friend.
We shared a lot with each other, but I came to learn she was hiding the most vital thing from me. Had she confided in me earlier, maybe I would have been able to help her.
Everyone thought my cousin, who was sickly, had bronchiolitis or asthma. We all encouraged her to have an X-ray done, but she would always tell us she got better following antibiotics. But her breathing was so tense, and she would go on and on coughing.
Eventually, after much persistence from family, she agreed to have an X-ray done. It revealed she had tuberculosis. She began TB treatments, and she told me that it was not a new infection. It was actually TB relapse. She’d had the disease before, and I suspect something had gone wrong, and she didn’t complete her treatments.
It was during one of her visits that I discovered something that caught my attention. It prompted me to ask her if she had done her HIV testing. She replied that she had, but the results were always negative.
I failed to understand her; I couldn’t believe she would hide such an issue from me, but I had actually read her diagnosis with my own eyes.
During her visit, she had given me her health record book so that I could help her write the dates of her upcoming TB injections. I clearly understood the medical abbreviation that was written in its pages.
The doctor’s notes read that my cousin was HIV+ and was only on Septrin, used for treatment of infections. She had not started antiretroviral (ARV) medications.
That night, I thought a lot. Why would she hide such a thing from me, a close friend and family member? I made up my mind that due to her worsening state, I needed to talk to her point blank.
The following day when she visited, I sat her down and narrated to her how people have had full and successful lives even with HIV. I disclosed to her that as a health worker, I fully understood the abbreviation in her clinic book and knew her status. I counseled her and encouraged her to accept her status and start living a positive life.
My efforts were in vain. She never fully acknowledged her health condition. I encouraged her to do a CD4 count, and I explained to her that as someone who had worked with HIV patients before, I could help her.
I would have done everything and anything possible to help her.
Like many, my cousin never got the treatment she needed due to the stigma surrounding the virus. Hundreds, if not thousands, of people die in silence because they refuse to share their HIV statuses with those who are able to stand up and assist them. There is so much stigma associated with HIV/AIDs, including self-stigma. Women especially remain silent because of the fear of being seen as promiscuous.
But women who have only known their husbands, or who have only had one boyfriend, can be found to be positive. And there are those who are born with HIV. Today, with the availability of ARVs, HIV is no longer the death sentence it once was.
While it may be difficult to disclose, it is important for those who are diagnosed to speak out. Here in Zambia, HIV drugs are free of charge, but the fear of being known as HIV+ leads people to neglect their health and avoid life-saving services.
The memory of my cousin is still fresh, and I wish I could have helped her. We must work together to end the stigma associated with this deadly virus. We must continue to preach about the importance of disclosure, and do all we can to help those impacted access services and live full lives.