Health

HIV: Not one of us can say, 'never me, never mine'

Mia Malan

We feature four HIV positive women in their 40s who fit the profile of a typical M&G reader.

We feature three HIV positive women in their 40s who fit the profile of a typical M&G reader.

Anyone can contract HIV, regardless of their income, social status or race. This week we publish the stories of three South African and one Namibian women with HIV in their 40s. They all fit the typical profile of an M&G reader – people just like you. The stories are extracts from the book Not Me, Not Mine: Women, Girls and HIV.

Faghmeda Miller 
Born: October 31 1967
Age: 46
Diagnosed: 1994
Home country: South Africa 

I was getting married in April 1994 when everyone here in South Africa voted for the first time.

I left my country and went to Malawi with my husband. Six months later I came back a widow.

He actually died in my arms. I tried to stop him from dying. I didn't know that he had died of Aids; he didn't know it himself. The doctors knew, but they never informed me, his wife. Later, when I went back after I knew, they told me it was because of patient confidentiality.

I thought I might have had cancer or something, I never thought HIV. And I asked myself this question: what if you do have HIV, but it was like, no man it can't be, where would I have gotten HIV from; not even from who, but from where.

I felt extremely angry. Not just at him, but at the whole world. Because for me all I could think of was that I had brought this shame upon my family. I never thought I could go back home and say, Mom, Dad, I'm dying of Aids and my husband gave it to me. My late husband.

Ja, Muslims don't get HIV, you know.

I tried to live all my life, you know, a perfect Muslim lifestyle: obey your parents, obey elderly people, don't backchat people and things like that. I waited until I was married before I slept with someone. What did I do wrong? I must have done something wrong.

It's been 18 years now that I'm living with HIV; but it seems like yesterday that it all happened. I'm still the only Muslim who is really vocal about HIV. In my community there's still big discrimination against people like me. I don't even encourage people to come clean and be open about their HIV status – it's not an easy road.

What is going to happen to me when I die? Because I'm still, I must be honest with you, I still have that fear that at the end people will reject me. 

Because I'm a woman, people like to tell me, you know, I should not be so vocal. My people are not very talkative when it comes to issues like that. But for me, we don't live in the dark ages anymore; we have to move with the times. I don't encourage people to indulge in sex, I can't say use a condom if you have sex before marriage. I have to respect my religion as well.

I made peace with the fact that this was chosen for me.

We are all human beings, you know, we all strive to please our creator. We all want to go to a good place when we die.

Linda de Villiers*
Born: December 31 1969
Age: 44
Diagnosed: 2006
Home country: Namibia 

First of all, I found out he had cheated and I asked him about condom use and he kind of said yes and I half believed him.

The thing is you never know what you'll feel, right? And the period from when I got tested to when I got the results was the worst of my life, because I didn't know for sure. I sent a lot of really rude SMSs to my ex at the time, while I was waiting for the test.

My doctor said you're HIV positive. For some reason, I felt some relief, okay, at least I know.

Now I know what it is, I know what to do and how to deal with it and I'll deal with it. I'm not angry anymore; I lost my anger. I can't go backwards, I don't want to go down, there's only one way to go and that's forwards, really.

My grandmother is very Christian and for her Aids is like punishment from God or whatever. I don't have a Christian background, I don't think sex is a very bad thing and this is a punishment. For me it's just like, it's just a disease, I'll deal with it.

From day one I have been open about it to everybody here, people I work with, friends, all my family, I told everybody at the same time.

In the beginning I worried about having a relationship with somebody again – can I still have sex? Would people still want to have sex with me?

I was very, very depressed for a long time and I didn't see the point of life anymore but looking back on it, with HIV, it's manageable.

I know I'm educated, I'm not poor, I have medical aid, I can search things on the internet, go to the right doctors. Obviously we all have to die but I don't want to die young, I want to live life to the fullest and get old.

* Not her real name.

Mercy Makhalemele
Born: September 9 1970
Age: 43
Diagnosed: 1993
Home country: South Africa 

In 1993 I was an ordinary young black woman from the township – we all wanted to be teachers, nurses, social workers. There was nothing that I couldn't dream.

Post-1994: I'm HIV positive, so what's the point? I've got to deal with this – my child is going to die, my husband will die [between 1994 and 2003, free ARV treatment wasn't available at public health facilities in South Africa – editor].

Twenty years ago a mother could dream of her child's life before they are born. That gift is gone. Now that is like a sword in my heart. Because there is nothing worse than thinking that your child died from a sexual act. That you could have prevented this. Ninety percent of people living with HIV contracted it because they said to somebody: "I love you."

When I disclosed this to my husband, he beat me up; he almost killed me. I was blamed for bringing the disease. The next morning I went to work and he came to work to insist that I must pack my stuff; he's not going to live with a person with Aids. My co-workers heard this story and immediately after that I was dismissed from work. 

When my daughter was two-and-a-half years old, she died. Every year on May 5, the entire May, whether I like it or not, I become an empty box. I can't stop mourning. I cannot not sometimes wish she was alive.

She's not here. But it doesn't kill me. We women need to be able to heal ourselves, so that we can live with the pain. Because I know my daughter would want me to live and be happy.

Life is not lost because every little step that we take, it's because somebody has walked before us, somebody's footprints are still within us.

My mother says there are people who will build and they will never have homes. 

The reality of Aids is that you change. Quite a lot. Now those changes may be very difficult to deal with if you don't understand. If you have not found ways of dealing with those changes, you may not survive for long. 

You are a mother, you have a family, you've got to be responsible. You can't sell your treatment, you can't smoke it. You can't do these things, because you're going to die.

I chose to live because I wanted to raise my son. Every year of my life I have one year added. 

I want more to be with my son. I thought when he's 23, I would say, God, I am ready anytime; I'm prepared. But I have this thing that I still want – to see more of my son.

Anne Leon
Born: April 30 1965
Age: 48
Diagnosed: 1995
Home country: South Africa 

I picked up the newspaper one day and the headline screamed: "Ex-boyfriend infected seven women with Aids [sic]." And I was so shocked at what I saw. I sat down with my fiancée Trev because I was engaged and due to get married, and said, this was my ex-boyfriend.

About 10 years ago, I had been dating that guy and he knew that he had Aids, and he didn't tell me.

I had unprotected sex with him. He also infected seven other women, some of whom sued him. Unfortunately, he never went to prison. He was too ill by that time. By continuing to have unprotected sex, he allowed himself to become reinfected [with different strains of the virus] and those reinfections caused him to become gravely ill and he landed up dying in a hospice. 

I thought well, I could have only got it from my ex-boyfriend. Because I've never had unprotected sex with anyone else in my life but Trevor and him. I'd always used protection. And I phoned his mom to ask her where he was because I needed to speak to him.

She told me that he was in a hospice in Westville, and I asked what he was doing there, and she said she couldn't discuss that with me; I must go find that out for myself. So I went to see him and I saw him on his deathbed.

By that stage he was very infected. He had a form of cancer that Aids patients get, that eats you from the inside out. He suffered with slight dementia. 

He had what looked like syphilis sores around the mouth. 

The nurses had wrapped him in clingwrap from his ankles to his neck to hold the pus sores … sort of in place. And you could see the pain in his face and his eyes. 

As I walked in, when he saw me, he was quite agitated at me being there. He asked me if I'd come to jump on the bandwagon to sue him like the other girls. And I said no, I just need to speak to you. 

Trev and I had taken out life insurance, so that when we start a family  we would be able to go to a good hospital to conceive our children. The doctor called us and said, are you sure you want to go ahead with the wedding? I was HIV positive.

I thought it was a disease that gay people got, or a disease of poverty and where you saw a lot of poverty was in the black community, or that it would come across a prostitute's path because she was a very promiscuous person. 

Not for a moment did I think HIV could happen to me.

What now? I can't give this man a healthy child. I've just been told that if I fall pregnant I will infect my child. I can't guarantee that I can be the good wife that I would love to be. What if I infected him? I love him too much to do that. [In 1995, when Anne was diagnosed with HIV infection, neither antiretroviral drugs nor free prevention-of-mother-to-child-HIV treatment were available in South Africa's public health sector – editor.]

So I turned around and said, walk away while you can, because I'm not going to hold you to this. He said, I'm not doing that, love is far greater than this virus.

I was the first to announce that I'm a white woman with Aids. And as I got off that podium, there were white people who were sitting on the side. And they were spitting on the floor as I walked past. 

And I just held my head up high and I walked past them and I thought, shame, you're acting the way that you do because you don't know any better.

I realised that the knowledge that I had learnt through coping with HIV was something that I could share; turn into something positive. I decided to teach primary schoolchildren the basics on HIV and Aids.

Then I look at the bad of what I've been through and what I still go through due to HIV and I look at what it's empowered me with. That empowerment outweighs what I've gone through.

Not one of us can turn around and say, "Never me and never mine."

Because you don't know what life is gonna throw at you – I'm just like you.

Not me, Not Mine : Women, Girls and HIV was published by the Joint United Nations Programme on HIV and Aids in 2013. The publication was supported by the Swedish and German governments. Bhekisisa is a public-private partnership between the Mail & Guardian and the Deutsche Gesellschaft fur Internationale Zusammerarbeit (GIZ)/German government. The book is available at UNAidsrstesa.org

                                                           


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