HIV stigma: ‘My brother is ashamed to call me his sister’

There are lessons from HIV on how to effectively respond to Covid-19 and beyond, says UNAIDS
Taking lessons from HIV (File Photo).

Zitha said that from the moment she found out she was HIV positive, she experienced stigma and discrimination from her family. “It made me wonder if their love for me was just meaningless words. Fortunately, I was blessed with a group of loving souls who continue to show me, unconditional love,” Zitha said.

She said that before she was diagnosed with HIV, the relationship between her family and herself was always great. But a year ago she became ill and lost weight.  “At first they were unaware of what was wrong with me. Desperate for answers, I found myself looking in the wrong places. I went to different churches, I bought over-the-counter medication. I tried some home remedies, but nothing helped my sickness.”


Zitha said there was no improvement as she experienced persistent diarrhoea, a loss of appetite, vomiting, headaches and skin rashes. “I went to my local clinic (Eziweni Clinic) where a proper health examination was done. This included HIV, TB, STIs and pregnancy. I tested positive on HIV and pregnancy. But unfortunately I had a miscarriage two months after the tests due to health complications,” said Zitha.  

“For over seven months I kept my HIV status to myself because I was not ready to deal with my family because even though they didn’t know that I was HIV positive they saw that I had lost so much weight and already started mistreating me. I don’t know how or why, but my young brother found the container of ARV medication and immediately without my consent told our whole family that I had AIDS. I felt betrayed because I was still struggling to accept my status. I  had not yet told my son that mommy is HIV positive. And I also felt ashamed because they started referring to me by hurtful names,” she said.

Bheki Khumalo, an HIV and AIDS lay counsellor, said nobody should have the right to disclose someone’s HIV status as this was a violation of their right to privacy. “Remember, it’s always important to disclose your status and we promote it. But if some chooses not to disclose, they can quietly take their ARVs and end up living a positive lifestyle. I always advise my clients to never rush to disclose their HIV status. They need to be mentally ready in case they end up having to deal with rejection, isolation and resentment. Take it easy, work on yourself and join a support group,” Khumalo said.

Zitha said her youngest brother used to refer to her as his favourite sister, and would regularly take money from her. But when she could no longer earn money and provide for her family’s needs, they rejected her.

“My own brother now says he is ashamed to call me his sister because I have HIV, I’m an embarrassment. What pains me the most is that my innocent son who is just nine years old was maltreated and has experienced discrimination from my family,” said Zitha.

Long way ahead

According to Fikile Lorraine Simelane, a professional nurse, “Even though it has been 37 years since the first case of HIV was reported in South Africa, people like Thandolwethu with HIV are constantly in a bad situation because of the HI-virus. To be honest, we have a long way ahead of us. We need to work together and fight stigma and discrimination against people with HIV. People living with HIV need to focus on themselves and stop worrying about what people say about them, because people will always talk. Adhere to your ARV therapy, live a positive lifestyle by eating healthy food, exercise and use condoms. But most importantly have a positive mind.”

Simelane said “There are those cases where immediately a client discloses their HIV status their families will start maltreating them, to the point where they will not even want to share a bed or a drink from the same cup as you. And that might make HIV clients give-up and stop taking their ARVs. Some families will influence you and tell you about churches that can heal you.”

“My advice to people with HIV who are worried about people talking behind your back, please don’t mind them, because people will always talk, whether you are on ARVs or not. Just tell yourselves that at least I know my HIV status and I am alive,” Simelane said.

“Remember that you are doing this for yourself and not for someone else. Join a support group or adherence clubs for people who are infected with HIV,” said Zitha, who is now happy and content with the love and support she has found outside of her family. – Health-e News.

An edited version of this story was published by Health24.


  • Cynthia Maseko

    Cynthia Maseko joined OurHealth in 2013 as a citizen journalist working in Mpumalanga. She is passionate about women’s health issues and joined Treatment Action Campaign branch as a volunteer after completing her matric. As an activist she has been involved with Equal Treatment, Planned Parenthood Association of South Africa, Prevention of Mother to Child Transmission of HIV and also with Marie Stopes Clinic’s project Blue Star dealing with the promotion of safe abortions and HIV education.

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