HIV stigma in the suburbs

2013-12-01 14:00

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After 25 years of World Aids Day, shame still exists.

Gone are the days of people dying behind closed doors, ashamed to queue at public clinics for life-prolonging antiretroviral (ARV) drugs, which became available 10 years ago.

This was a time when the stigma attached to HIV and Aids was rife in townships and settlements, where most people use public healthcare.

Thousands of state health patients are seen every day collecting their monthly allocation of ARV medication at government clinics and at dispensary sites at hospitals.

Many of these patients are no longer fazed by the neighbours who see them.

However, move into the suburbs and that picture changes.

Some patients here still have their ARVs delivered by courier to their homes or elsewhere, where they will not be exposed, and others hide their pills in vitamin bottles for fear of being identified as HIV patients.

The Aid for Aids consultancy, which manages HIV programmes for 40 medical schemes, including Bonitas and the Government Employees Medical Scheme, says of the 215?000 people registered with them for HIV treatment, about 80% are their schemes’ main members.

Discovery, the country’s largest medical scheme, has about 39?000 members on the HIV programme.

About 60% of those receive their medication by courier.

Dr Johan Gerhard, a former state doctor who now runs a private practice in up-market Fourways, Johannesburg, says although the stigma around HIV remains, it is far less severe than it was 10 years ago.

“As a person who has worked in the public sector for more than a decade, I can confidently say poor people and those who are working but can’t afford private healthcare, have conquered the HIV demon.”

“The biggest problem now lies with affluent people. The stigma is so rife among them that it breaks my heart when I think about the burden they carry without the support of family and partners.”

Another physician specialising in HIV, Dr Raksha Patel, agrees, saying she sees a similar trend in her Durban practice.

“Most of them are educated people who have access to information and can have the best treatment money can buy, yet disclosing their status is still a mission impossible,” she says.

“Recently, a young lady came to see me ready to start treatment. She said she had known about her status since 2007, but had never told her longtime partner that she was HIV positive.

“When I asked why she never disclosed her status, she said she was afraid he would think she was the one who infected him and probably leave her.”

Patel’s patient is not the only educated young woman with a good job who is living a lie for fear of rejection or judgement.

There are many out there who prefer to be silent.

Three women

They live, they love, they lie


Siza (35) has vowed never to disclose her HIVstatus

to any man because each time she does, the guy hits the road. She has tried it three times and it never ended well.

“I know the pain of rejection after disclosing your status and I don’t want to go through that again,” she says.

“These guys act like they are fine when you come clean about your HIVstatus. They give you hope that all is well and then brutally snatch it from under your feet without a warning.”

Siza, a media strategist who lives in an up-market suburb in northern Johannesburg, was diagnosed with HIV in 1999 after she and her then boyfriend went for an HIV test.

He tested negative and their relationship continued, but three years later he left her for another woman.

“I would be lying if I said he left because I had HIV. He had no problem about it and the fact that we had a good relationship for about three years after shows that he was okay with the situation,” she says.

Siza, mother to a grown-up daughter, met another man a few years later, but it also didn’t work when she disclosed her HIVstatus. But it was her most recent break-up that made her vow never to come clean with her partners again.

“The latest devastated me and scars will remain with me for a very long time,” she says.

“When this guy suggested that we have an HIV test together, I asked him what he would do should the test show that I am positive.

“He said he would stay because he loved me. I believed and confessed before we even took the test, but not long after that, he became scarce in my life. I knew that it was the end of us.”

Although Siza has been to several psychologists for help to overcome her fear of rejection, each time a relationship fails because of her status, she goes back to square one.

“It hurts me deeply because it showed me that no man will ever love me. But ... I don’t hate him and

I’m certainly not bitter. I understand how difficult and scary this is to somebody who is not knowledgeable about HIV.

“I believe in condoms and I always use them. I am also adhering to my treatment and my viral load has been undetectable for years, which means the chances of me infecting anybody, even if the condom breaks, are very slim.” She adds that she would never intentionally infect anyone.


Every month Phumla’s sister, Sindi, drives almost 80km to collect her sister’s HIVtreatment.

Phumla is one of those people whose antiretroviral drugs are delivered to her, courtesy of her medical aid company.

She chose to have her treatment delivered to her doctor so that nobody except her family would know that she was on ARVs.

Phumla, a public relations executive from Johannesburg, says her sister doesn’t mind doing this for her “because she is nurse and understands that I need my medication. I’m uncomfortable with collecting it myself.”

Having her medication delivered across town has worked very well for this 32-year-old because very few people know that she is living with HIV.

“I made that decision to consult a doctor far away because I cannot allow people to judge me and to think now we are ‘buddies’ because we take ARVs for survival.

“My battle is mine alone. I don’t want to give people something to gossip about. Hell no! I have a reputation to maintain,” she says.

Phumla’s struggle forced her to take a break from relationships. For years, she was single, until the man of her dreams came along and stole her heart early this year.

Knowing she was living with a big secret, Phumla would often bring up the subject of HIV and Aids to see if Mr Right was open-minded.

Although he responded that he would remain in a relationship with an infected woman, she could tell he was lying.

She became increasingly fearful of rejection and became worried about how she would explain taking medication to her boyfriend every night if they lived together.

“We were talking about having babies now and that meant we had to stop using condoms eventually. I came up with a plan to deliberately hurt him so that we could break up,” she says.

“I started a big fight so that I could sabotage our relationship because I knew that once he found out that I was taking ARVs to survive, that would be the end of us. I had to do this to protect my heart

and myself.”


Tebogo (36) was diagnosed with HIV in 2008.

More than two years later, and while pregnant with her second child, she ended the relationship with her longtime partner, the father of her two small children.

Last year, the biotechnologist from Johannesburg’s northern suburbs decided to give love another chance after meeting the love of her life.

“He has everything I need in a man. He is kind, generous, loving and affectionate – not to mention successful and loaded.

“But the biggest problem with our perfect relationship is that he doesn’t know I am HIV positive. I don’t even know how to tell him,” Tebogo says.

“Ever since I started seeing him in June last year, I have had to pack my treatment in a multivitamin container so that he thinks I am taking a vitamin tablet whenever I pop a pill every morning. He knows I am a health-conscious person and probably thinks nothing of it, but keeping a secret this big from him is killing me inside,” she says.

“I am practically living a big fat lie. My heart sinks when I think what will happen on the day he finds out that I kept this from him, even though we use condoms.”

Tebogo says her worst fear is that her relationship will crumble the day her secret is revealed.

“I am scared. God knows I can’t bear another rejection because of my HIV status. Knowing that you are HIV positive and that you are keeping it from your partner is devastating on its own.

“But being rejected by a man you love because of a disease that you did not ask to have, and know that you can never be cured of, is beyond me,” explains Tebogo.

If this is you, call?...

There are many psychologists specialising in HIV and there are many organisations you can call to seek help.

Most counselling is provided free and organisations can direct you to a support group in your area.

»National Aids Helpline 0 0800 012 322

» Positive Women Network 0 011 339 7679

»?LoveLife Thetha Junction 0 0800 121 900

»Aids Legal Network Advice Desk 0 021 447 8435

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