Karolina was diagnosed with HIV in 2004, and received counselling that has helped her to accept her status. Her partner died a month prior to the interview and his refusal to be tested for HIV is still very much on her mind: Just “before he passed away I decided to take him to the hospital by force… The result came out positive”.
At first her children were afraid of her status, and she was worried that one of her boys was rejecting her. But “now they are fine”, and she is proud that one of them even came to her for advice about relationships.
Karolina was introduced to ICW at another support group. She partly attends to get the food she needs to take with her antiretroviral drugs: “that is why you always see me coming to support group meetings, hoping to get maize meal”. But sharing her problems with others also “brings peace into my life… even when I go back home I feel good”.
I was brought up in a village called Oneleiwa. I did not grow up with my parents, my ‘sister’ brought me up. She is older than me; she is my mother’s sister’s daughter. I grew up in poverty and hardship. I didn’t go to school, I didn’t have a lot of clothes to wear, but there was enough food, especially from our field.
Later, one of my uncles came to our house and said I must go to school. I only went up to Standard 5; after that I ran out of time – when I started school I was already a big girl. That sister of mine, she didn’t put me in school when I was younger, because she used to keep me at home and send me here and there, and I had to look after her children, and sometimes go and fetch the cattle. I didn’t really get any education.
My parents were staying in another village, not where I was brought up. I don’t really know why, but… sometimes we children are too many, they cannot really take care of all of us. My father, he passed away in 1980, but my mother, she is still alive. She is very old but she is very fine.
I went to see her in January. Right now our relationship is OK. I used to be afraid of her because I was not used to her, but now we have both become adult our relationship is a good one.
Becoming a mother
After Standard 5 I got my first boyfriend. We had children together but we were not married. I had three kids with him – two girls and one boy. After that I came to Windhoek to look for a job. I have stayed in Windhoek for a long time now – 20 years – but I still haven’t found a job.
I found out that I am HIV positive in 2004. I am on treatment but still I am suffering, because there’s no job. I am taking those [ARV] tablets. [Having children with my boyfriend] was a mistake; in those days there was no safe sex. We did not stay together for a long time.
Our three kids, they are in Windhoek with me. The first was born in 1974, the second in 1976 and the third in 1978. We were in a hurry… I am also a grandmother.
Diagnosis and partner’s marriage to another
I used to be sick, but not really sick. I used to have a lot of spots on my face. Then I decided to go to the hospital and they said that I must go for blood test. That day they found out that I was HIV positive. I don’t really know how I got it.
I had a man – not the father of my children, someone else – and this man, he had a new girlfriend while we were together. He went to the north (Owamboland) to marry this new girlfriend, and after they got married his face was full of spots. Then I realise I was having the same spots and I went to the hospital to do the HIV test. That woman passed away in 2003.
‘My only choice was to accept him’
[My partner and I], we had been together for 15 years. He passed away on the 2nd July 2006. When he [went north to marry] he went behind my back. I only came to hear about it when he came back. After he got married, I felt that it doesn’t really matter – I can’t go on chasing after other men – so I decided to stay with him. It really hurt me a lot, but I had no other option.
If I said that I am going to dump him, it would be difficult for me to cope. I had no job, my only choice was to accept him, but in my heart I was having difficulty accepting the situation. I went and talked to one of my family and he said that it doesn’t really matter, you are grown up, just leave it, continue with your relationship.
I don’t really know why we didn’t marry, but maybe… I heard people said you can’t marry that person, she is old and she already has children of her own – like in the olden days, people didn’t like to marry someone who already has a lot of children. So maybe his family was not happy with the idea of us getting married, and he decided to get someone younger.
Partner’s denial and death
I only came to tell my partner that I went to the hospital and was tested for HIV when I was going to get the result. It was positive. He did not understand it. He was saying that it is women’s stuff, I must know where I got it – that he had nothing to do with it. He refused to go for a test, but during those times I kept telling him to go to the hospital, especially after his wife died, and one of the kids also died – but he still refused.
Before he passed away I decided to take him to the hospital by force. Me and one of his family; we decided to take him. The result came out positive and we were told to go back, so that they could give him medication. He was given that medication on a Friday so that he could start taking it from Saturday morning – on Sunday morning he was dead.
Before I went for my HIV test, I had already been told not to have physical contact with my partner; he agreed and we used a condom whenever we had sex. I told my partner that I was HIV positive because I was on treatment and he was not. [Thinking that] maybe he is also positive, I told him so that we could both be on treatment. [But] he refused to accept the idea. He said that it is not true, and even if it is true, I know where I got it – he doesn’t have it. His behaviour towards me did not change, he carried on like he used to.
The only problem was his fear of going to the hospital. The fact that he accepted me in that way… I think he had realised he was in the same situation, because if he was not in the same situation he would have rejected me.
‘I never rejected him’
It was hard [telling my partner]. I didn’t know how to start, but eventually I found my way. I was hard on myself and I was also blaming him, thinking that he might be in the same position as me – and in the end I was right. [But] I never rejected him. The only thing I wanted him to do was to go to the hospital for medication, but he kept on refusing.
His family did not blame me [when he got sick], but they blamed his married wife – I heard about it. They were saying that this woman, she has brought in the disease, because our brother has been together with [me] and they had never seen anything like this… but after he married this woman he became sick, and it has now resulted in his death. They kept talking like that – they never said anything about me.
I have no desire to be with a man [since my partner passed away], and I am also thinking that I won’t get another man. I see myself as a bit old, and people are also talking – saying that my husband died… it is true [laughing].
Making ends meet
I have never been employed in my life – not even as a maid. The only work I did was self-employment, selling my meat. When my partner was alive, I asked him to give me N$50 to start my business. [I made a bit of money] but sometimes you lose and sometimes you win.
[Now] I am real having a hard time when it comes to food. With those [ARVs] you need to have food, that is why you always see me coming to support group meetings, hoping to get maize meal…
My daughter, who is working at the hospital, she buys me maize meal and paraffin and gives me money to buy paraffin and also fish, which I dry. Or sometimes I go to the north – Owamboland – and I bring back dry spinach. My daughter provides [the travel money] for me, but I can only go there once in a year – she cannot spare the money to go up to Owamboland twice.
[My sons are unemployed]; they don’t give me any money. They buy us meat or fish, washing powder… then we share. My brother knows my status, but he is somehow… so so. But he still comes to see me.
Yes, he has a job! One day I asked him to give me money so that I can go and buy myself maize meal – he told me to pick up a bag of salt so that I can go and sell it to get the money to buy the maize meal myself [laughing]. I sold some for N$20, but now people are not buying… But about him helping me, I won’t say much about it – he comes, we joke and laugh when he is here, but he still doesn’t help me.
Sources of hope
Yes, I am a Christian. Christianity has brought good things into my life – like right now my partner has just passed away, sometimes we don’t have food, and thoughts come into my mind, and those thoughts are usually bad ones. But the moment I decide to pray to the Lord, it really gives me hope, and after that I am OK.
When you are being counselled, they tell you that it is not the end of your life when you are told that you are HIV positive. You must do as they tell you – not to have sex, not to drink alcohol – that is it. It was hard for me because I was thinking that maybe this is the end of my life, but after I had been counselled I stopped having those thoughts of dying. [They also say] you have to inform your partner as soon as possible. I chose to tell my children about it later.
Breaking the news to her children
I told my children that maybe you will see me shaking, or being sick… that I tested positive for HIV, you mustn’t be afraid, because now I know my status. My children accepted it, but they were afraid because from then on they were different. And one of my boys was showing funny behaviour towards me, like he was rejecting me. If I prepared food he would say that he is not eating.
Nowadays there are a lot of workshops held in many places and sometimes I told them to go and listen. Now they are fine. I tell my children to really protect themselves, especially when it comes to sex. I am not telling them not to have sexual intercourse; I tell them to use condoms. It does help because they listen to me.
One of them came to me for advice – one of the boys. I was feeling proud [when this happened]. I know it is not good – he should really wait for someone to marry – but I felt good because he did not want to make a mistake. I know that he wants to have sex, but first he wants to get information.
I became a member of ICW in 2005. I was introduced by Jennifer [project officer of ICW]. She found me in another support group. She introduced the ICW to us, saying they are a social movement for women and everyone who wants to can become members. It is the first social movement that I have joined.
I myself do not have any aims for ICW because I do not know a lot about it. I did receive some training and I am still a member. At meetings we talk openly about women’s stuff, and we are happy about this social movement. We haven’t yet seen the good things [from the movement] but we are hoping that in the near future good things will come.
Sharing troubles, bringing peace
ICW has brought good changes to my life, because if I am thinking bad thoughts, I start to talk and show off about our social movement for women and I am real proud of it.
We talk about issues that are affecting us women who are HIV positive, because some of our members, they are having troubles, especially from male partners – people are living together but they don’t have peace. Like right now my partner has just passed away, and when we meet I would talk about it with other women in our social movement.
One thing I have learnt is that when we meet it brings peace into my life. When I am at home, sometimes I think of many things which are not good for me, but when we come for a support group meeting it relaxes my mind. Whenever we meet, we talk about our daily problems, and it really brings peace… even when I go back home I feel good. I see [being part of ICW] as something building me up, although I haven’t seen the good things yet.
Women together are more open
When there are just women, we discuss everything openly, but when there’s a man there, there are certain things which cannot be mentioned. We discuss all the problems that we face at home, and this life of poverty – what are we going to do?
Sometimes we ask questions. For example: I am on medication and the time that I am supposed to take my drugs is 8 o’clock, but then I [forget to] take them [until] 5 past 8 – should I take them or should I leave them? We help each other like that, because sometimes there’s someone who knows about the medication, and sometimes we have big issues going on.
Sometimes you have a spot develop down there… and when there’s a man you won’t really talk about it because you feel uncomfortable, so you just shut up. But when there are only women, you can say all you want to say. Everything is discussed openly, and it helps you as a person to be encouraged [to speak], because some of the issues are suppressing us.
The first day [I spoke in front of the support group] I was scared to talk about things, but later I got used to it. I was afraid [at first] because we were not used to each other, we didn’t know each other that much.
Membership and meetings
We had set up regular days to have a meeting – it is only now that we don’t meet as usual… on every Monday. What I think is the cause [of not meeting so often] is that people are saying that they are not getting anything.
ICW sends out its members into the community to tell other people about our social movement – to tell them that if you go to this support group you will be strengthened, and after that they come for the meetings. It is people that I know are HIV positive [that I contact]. Some people, we meet each other at the hospital when we are getting our medication.
In the beginning you didn’t know, but when you see them at the hospital you feel free to invite them or talk to them. First of all, you have to be careful not to jump to conclusions, and secondly you have to listen when they call out the name. We sit in the line, and you will see when he or she is receiving the medication. You say ‘Ooh! She or he is one of us.’ I was also introduced to our support group in that manner.
Working with the media
I heard about HIV in 1986, but we didn’t really understand much about it. Only in the 1990s did we come to truly understand. [I first heard about it] from peoples’ mouths. It is not like today, where one can hear about it from the radio and newspapers.
Yes, [we work with the media]. There was a time where we were in a workshop and they took our pictures. And there was another time where a person had to go and speak on the TV. There was a time when Jennifer took some people to the radio studio. Those people who went, they received some things. Many people don’t want to be shown on TV – they don’t want to be seen by the whole nation. There are those that are free, and there are those that are not free to be seen by everyone.
In the beginning there was a lot of stigma, but now there are so many people [with HIV], and their understanding is better, they will accept you. [I have not felt discrimination]; I only see it happening to other people. People need to be encouraged that HIV/AIDS is a sickness like any other sickness – we don’t need to reject each other.
[If the media works with us] I think there will be a change, because sometimes… sometimes maybe there’s someone who is hiding because of fear… when this person hears someone speaking on the radio this will help the other person to come out, and also to know that he or she is not alone. [If the media becomes seriously involved] it will bring us value by strengthening us. If there’s no media – just us being just quiet – there will be no value.
People don’t want to listen
I think [the media is providing enough information], because there is nothing much we can do [if] we don’t want to listen. We the people, we don’t want to listen. Let me give you an example. A guy who has a girlfriend who is on treatment goes back to his wife in the north, not saying anything, just having sex with his wife like they used to. Or let me say that I am a younger person and I am on treatment – today I am going out with this guy and tomorrow I am with someone else, but I am not using any condoms. Through this the virus is going to keep spreading.
I always explain that drinking too much is going to get us into trouble, because when you are drunk you will not be able to think of using a condom… me, I slow down on alcohol, because when you are less drunk you will think of using a condom, so that we can stop the spread of HIV/AIDS.
Hopes for the future
I would advise [people] to go for an HIV test, because when you know that you are HIV positive you are better, because you can be counselled. And if you are HIV positive they will tell you how to behave. You have to protect yourself. You have to stop taking alcohol and you have to adhere to your medication plan.
I am on treatment. We receive information about the medication – you take this [twice a day], choosing your own time – if it is 8 o’clock in the morning then also 8 o’clock in the evening.
[In the future] I want to see help, and I also want to see education going on regarding HIV. I want the ICW organisation to remember us, and also to continue encouraging us, so that we may also encourage our younger people in the nation. My hope is that things will go well for me – as long as I am healthy and encouraging myself, it will go well.
This interview has been specially edited for the web and cut down by more than half. Some re-ordering has taken place: square brackets indicate ‘inserted’ text for clarification; round brackets are translations / interpretations; and dots indicate cuts in the text. The primary aim throughout has been to remain true to the spirit of the interview, while losing questions, repetition, and confusing or overlapping sections. Extracts from these interviews also appear under the key topics; these extracts pull together relevant comments and in a few cases include sentences that have been re-ordered or cut from the edits.