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ZAMBIA: Sharing Her Secret Could Have Saved Her Life

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

“I will visit you this afternoon when you knock off from work.”

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.

 

Topic Health
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Comments

Hi Dando,

Thank you for sharing your story. I completely agree with you that people should change their opion to disease like HIV. From my perspective, rumors are the root cause rather than virus making people dead. It is necessary to let people understand HIV's knowledge so they can treat HIV patients easily. Let's work together to achieve this goal.

Best,

April

Nothing is impossible.

Hi Dear, nothing is impossible for real,and if we work together we can make a difference.Anyone can acquire the virus regardless of who they are in society.

thanks alot for your message

Dear Dando,

I am so sorry for your loss, losing our loved ones is the worst thing in this world and the fact that your cousin could have been saved makes her death even worse. Yes, you are right it's the stigma around this disease that don't let people take help. The way HIV/AIDS patient are seen in the society and the way they are judged needs to be changed. We need to value people's lives more than anything else. 

I am glad you spoke up and shared your cousin's story, this would surely help change the way people see this disease on some level.

Thank you

:))

Your story shows us how we must grapple with stigma in communities where people live with life-threatening ailments. You have underscored the importance of campaigning for awareness, understanding and compassion for those who are HIV-positive. You have further widened our understanding of the issue by focusing on self-stigma of the afflicted. May you continue to extend help to those who will come your way, cousin or no cousin, and help save lives by giving them advice and a compassionate perspective. 

Blessings, libudsuroy

''Every Day is a Journey and the Journey itself is Home.'' (Matsuo Basho)

Thanks libudsuroy;

I will do my best to reach out for those who come my way.I hope you too will do the same,cause its by working together that we can achieve a common goal

thanks alot

Hi Dando,

Sorry for your loss and thank you for sharing your story and speaking out. Stigma kills faster than any disease. The fear, the feelings of worthlessness, the eyes etc is too much to bear. There is still a lot that needs to be done in these our parts to break the stigma and help people with diseases like HIV to have the necessary treatment and a happy productive life. www.joy2endure.com

Arrey

its true,stigma kills faster than anything.Thats why i feel HIV organisation especially those with support groups should work hand in hand with government and private health care facilities in order offer continues counselling and support.

thanks Arrey

Dear Dando -

the caring and loyalty to your cousin was given through your knowledge and the positive pressure for her to seek treatment.  You are a true friend and true cousin.

Your commitment to this issue will make a difference in your community and in this world.

Thank you for your voice,

Natasha

 

Dear Dando,

What a story! Thank you for sharing.

Many people are afraid of what other people will say and that is why discrimination is still one of the major reasons why people are afraid to disclose their health problems to family, doctors and health workers.

Take heart sister.

And thats why we need to speak out on these issues,at home,school,,work places and churches.maybe the stigma can be lessened.

thanks for your comment Addana