Jeni has lived with HIV for 15 years. She found out her status after her daughter became ill and tested positive at 3 months of age. At first she suffered stigma and rejection:”I was so emotionally hurt”. She sought help from the churches, but found their message negative: “I started to believe God was punishing me”.
Jeni’s mood and health improved when she joined her partner in Namibia, where no one knew her status. At first her partner was in denial about his status, but eventually he”was so happy that I still accepted him”. She says they draw great strength from each other: “the more you support each other, the more positively you start to live”.
After researching the disease on the internet, Jeni started a support group for women in Windhoek: “I could see the frustration they were feeling; they didn’t have anybody to talk to”. She is now project officer with ICW, working to mobilise membership and to encourage policy development in women’s sexual health.
First of all I want to tell you that I am a 48-year-old who looks 16. I’ve been living with HIV for 15 years now and I am living very very positively.
My childhood was a bit of a mess because my parents divorced when I was very young, six years old, and being the oldest in the family it affected me so much. When they divorced, my mother was fighting in the liberation struggle and she was arrested.
So we were forced to leave Zimbabwe and stay with my Grandma in Malawi. It was our first time staying in a village because I was an urban young girl so it was very difficult. But as time went on we adjusted – ‘we’ is myself, my two brothers and my younger sister.
Even though my mother was released later, we carried on living in Malawi until I finish my schooling. On our way back to Zimbabwe, I met with a group of people who were going to fight in the liberation struggle, so I sent my sister and my brothers on to Zimbabwe and I stayed behind to fight for our independence.
We gained independence in 1980 so I went back home – it was very nice to be again with my mother… with my sister and brothers. It was a very happy occasion. I started working in the ministry. It was my first job – I was working as a receptionist and then I was promoted to be a clerk and so it went on.
I wanted to get more education so that I could improve my status so I started taking secretarial courses. I have always been a person who liked reading – a book, a comic or whatever, newspapers and everything.
Surviving an abusive marriage
I had to get married; I had a child with my first husband. But this marriage was very very physically and emotionally abusive. My husband was in the army and he was older than me. He was very jealous. He beat me up and he called me very bad names which started to make me… I started not to believe in myself anymore.
Even after all this time – making myself further my education, improve myself – I started to believe what he was telling me: that I am nobody without him, I would not survive without him, that if he divorces me no man is going to look at me again.
So I lost self-confidence; I started to think that I am not worth anything and stayed and we had a second child. But in the end I had to get out because it was too much – the physical abuse was now not only at me but
also the children. This was when I decided it’s better for me to get out of this relationship, even if I fail as he says I will. And I did overcome it with the help of my mother and my sister.
Long-distance relationship and diagnosis
Afterwards I met my second husband, whom I am still with now. We met in 1988; he had come to Namibia because he was working for the anti-apartheid movement in France. He was invited to support Namibia through their independence, but I was working with the Mozambican refugee programme in Zimbabwe so it was a long-distance relationship.
I think this is the time he got infected, when he was in Namibia. He would come to Zimbabwe like twice a year to see me and I fell pregnant and I realised after some time, when he had gone back to Namibia, that he had a sexually transmitted disease.
When I went to the clinic I was told by the nurse that it is a sexually transmitted disease, but I didn’t realise, I thought it was itching in my vagina. So after that I phoned him; I wanted him to explain himself – but you know men! As usual, they always say something – maybe you are using detergent to clean yourself! So I believed him.
When the child was born it was healthy, but after three months it started to get sick. I didn’t think anything of it, I just thought it’s normal for children to get sick when young. It started to get sicker, then it was like every two weeks I am at the hospital with the baby.
So one time, I think after six times going to the hospital, she was admitted. They asked me if they could take an HIV test for the child; I said sure – because I was very confident that it was not HIV. The day the result came, I was in the hospital with my child and it was visiting time and the nurse just came in and told me – it was the 1990s – that your child is HIV positive. Just like that, in front of everybody, without even having pre-counselling to prepare me or anything.
Because my child was sick and because I was also in the process of mourning my other daughter – from he first husband – who had just passed away by drowning, I went into shock. I didn’t know whether it was the shock of being told in front of everybody, considering the level of stigma at that time, but within two weeks I lost weight. I was so emotionally hurt and struggling with what to do.
Lack of counselling or information; family support
That same day I was told by the nurse I went straight away and phoned my partner to tell him that this, our child, is HIV positive. They also asked me to go for a test and I was telling him that you must go as well so we can know – are we both infected? Because I knew if the child is positive it means that me, as a mother, I am also positive. He promised to have it done.
I waited two weeks [for my result] and again they told me without any counselling. They just said you are positive, you must start planning if you have got other children, because you are going to die – and that was the message.
I was really depressed. I phoned my mother because I knew my mother and sister were the only ones I could talk to and reveal my status and the only ones who would support me. And my mother was also so shocked, but she supported me and said you must not put yourself down; you must make sure that you are going to live because you’ve got another child who is still young.
‘I was stigmatising myself’
When I phoned my sister she was very supportive; she came straight away and the way she was hugging me I was scared that she is going to get the virus – I was stigmatising myself! I didn’t know how it was transmitted. Because at that time it was like, when someone has got HIV, you don’t eat from the same plate, you don’t use the same bath, you don’t hug or whatever.
You can imagine that in 1990 there was no medication; there was nothing – not even hope that there is going to be any medication. There was only the message of death. You know I have always been a very big person physically, but I went from 75kg to 35kg – not because I was sick but because of worries, depression and stress. It was too much for me.
Searching for information; finding a role model
So that is when I started to say I am going to read more about this – because every time I got a rash, a headache, I thought I was dying because I didn’t have any information [laughter]. When I started to read, I got so interested.
Then my other auntie, who was working at the hospital – she was a role model for me. She told me I am also living with HIV, so you must believe in yourself, you must be very positive. So I started looking at her, every time asking, how are you? Because I wanted confirmation that she is OK – and if she is still OK I am also OK. She really keeps me going because every time I see her she is fit and well.
Judged by others
And then people in the communities – woo! It was terrible. The ones whom I thought were my friends; they were running away from me. They didn’t want to talk to me. They were scared that I was going to give them HIV and then you could see them whispering, talking about you… pointing fingers.
And also my partner was white; they started talking [saying] she is a prostitute… that is why she got this disease, because why else did she go out with a white man? They didn’t know that we met at work; he was one of our donors. They didn’t know how long it took for me to accept his invitations just to go for dinner.
So when they started saying that I was a prostitute, it was too much. I could not live with it. So when my partner asked me to come to Namibia I grabbed at it.
I had started going on the internet, reading that other people have been living with HIV for a long time, and I started to believe that I can also [survive] if I put my mind to it. I started to accept that I have got the virus, but my partner did not want to accept.
He said the results [of his test] have been lost [laughs]. I knew he was lying. Then he said I want you to come to Namibia and stay with me, because I think he had realised he was infected. But he only went for the
test when I was in Namibia.
When I [joined him] in Namibia I went straight to the doctor to tell him I’m HIV positive. I know there’s medication, I said – now I want to know how it works, and I want you to test my partner’s blood. I asked my partner how the test went, he told me again they were lost [laughs]. By that time he knew…
Leaving stigma behind – moving to Namibia
[Before I could move permanently] I had to finish my contract with the programme, but I was hiding myself away and I had become very thin. I didn’t want anybody to see me except my sister, who was giving me so much strength. My first child was, I think, 10 years old and I said that I am not going to tell him because he is still very young.
Staying together and supporting each other
When I came to Namibia, then my partner was so happy that I still accepted him, even though I knew that he is the one who gave me the virus. The reason why I accepted him was because after I started reading, I knew that if we separated, because I was still young, I am still going to need a partner – because I am also a human being. Then maybe I am going to infect somebody else so it’s better stay with him and support each other. That was the main reason: I didn’t want to infect any other person.
So I thought let me make him a life partner, to support each other, and I have seen that it works and I wish all the other people could do that, stay together and support each other rather than leave each other… because the more you support each other, the more positively you start to live.
And I lived for 12 years without taking any medication, because my CD4 count was as high as a normal person and I was not sick from that time we started living together and I was in another country where nobody knew me [or] my status. I started to gain weight and to live positively and forget that I am HIV positive. If I was still [in Zimbabwe] maybe I would have died early, because of the stigma and the discrimination.
A true partnership
We’ve been married since 2002. We have got a very good relationship now. We understand each other, we support each other, and we are treatment supporters to each other. When one is depressed – because HIV people get depressed – the other one comforts. This combination is really working well for us; we know each other now, our moods… I know to stay away and to tread carefully and give him space and he also gives me space.
That is why I am encouraging partners to stay together because the couple grows stronger… [and] if the husband rejects the wife, I need to give motivation to the wife, say that you are living not for your husband, but for yourself and your children and you can live longer.
Seeking spiritual solace
I told you that I could only tell my mother and my sister because I knew they will keep it confidential. My father? I didn’t even tell him because I knew he would go and publicise it. I started seeking churches that offer spiritual healing, because I knew that for me to overcome this I needed to have God or Jesus within me.
I can’t tell you how many churches I went to that year – you would not believe it. [But] the messages I was hearing put me off, because they were saying… all those people who have this disease, it is God punishing them. It made it even worse, because I started to believe God was punishing me.
Before I could interact with anybody – the pastor or priest or whoever – the negative message meant I [felt] they are going to point a finger at me – maybe chase me out of the church – because they see me as a sinner [laughs].
When I read my bible it says only God is going to judge me. Why should they judge me instead of supporting me, embracing me? I would rather pray by myself and seek a personal relationship with God – and I have found that for me it works.
The comfort of someone to talk to
I started a psycho-social support group in Windhoek, because I was working for the women’s organisation and I could see the frustration they were feeling; they didn’t have anybody to talk to. I could see it because I went through the same situation; I did not have anyone to talk to besides my sister and my mother.
I started thinking – let me go to other organisations and see if anyone is running a support group. Yet even the organisation for people living with HIV and AIDS, was not… they said, ‘We’ve got a lot of people and we don’t know what to do with them.’
I then sold them my idea, saying can I start a support group because I am also living with HIV? So that is how it started, and I also started on my community-based organisations – two of them – and I was reading so much, going through the internet, and that is when I come across ICW.
[At the time] I was involved in one group that I had started and I was also asked to start another project in Hakahanaby, called Family Hope International. This was catering for orphans and vulnerable children together with the support group, and we started a gardening project for people’s nutritional needs. We were providing soup from our own salaries when I started; when the donor heard about my project they came and started to support it.
It caught my eye: International Community of Women living with HIV and AIDS. And fortunately enough, they were advertising a post for Namibia [laughs]. So I said I am going to join and I am also going to apply – because my passion is to help woman who are living with HIV and AIDS.
And the second [motivation] was to help both us parents – because I want see both of us live, because my child was 10 then – and now he is working! So I know that if parents stick together, they can live longer.
My position in the ICW now is project officer in Namibia and I am to mobilise more membership for ICW and also to advocate and to pass on information to women who do not have access to it. At the same time I am working with a Member of Parliament in a project called Parliamentarians for Woman’s Health, with a particular focus on my HIV women.
Educating government and policy-makers
When we had our first meeting we could see that the MPs lack knowledge, and we need to educate them about why to focus on positive women. After that, we need to take them to the communities because most of the time they sit in their office, they don’t know the real situation in the communities.
We have started already, we had a workshop training for them – and this was a request from them. They know that HIV/AIDS is here but they don’t know the deeper issues. The training was given by an international organisation, and we also taught them about reproductive health… and they were so grateful, even the male participants. They were coming out with comments like, ‘Oh my God, we didn’t know that women are facing all these things, we thought they were just talking.’
Now we are in the process of taking them to the communities to hear their needs, what problems they face when it come to accessing health services. They will be talking to both negative and positive women, and at the same time meet community leaders, like the traditional chief and the councillor, you know. And at the same time we are going to meet with the service providers.
Because in Namibia there are no policies for HIV and AIDS, so with this project we intend to educate MPs with the issues, [in preparation] for a parliamentary debate to see whether a policy can be developed.
Linking ICW representatives with Members of Parliament
I think ICW membership now is more than 200 and comes from different regions in Namibia… we are not really meeting as much as possible, the only time I met them is when I was doing the WHO questionnaire. I am going to meet with them again when I go for the community needs assessment.
There’s a need for us to have a meeting for all ICW members. But what we have decided is to take two women from each region, one negative and one positive, to represent women within their region. They are going to form a committee and we need to link it to the members of parliament with whom we are working. This committee can come together every three months in Windhoek, meet with the MPs and report on what is happening in their region in women’s health.
At the same time, we are going to train 26 women in this committee on legal issues, to ensure that they understand the policies and legislation which have been put forward by the government, [so they can] do their monitoring properly and see whether the MDGs, which the government signed up for, are being pursued…
And if a policy is not being followed, then maybe there’s a need for the MP to go there and see the situation – in the hospital, the discrimination, the stigmatisation – so that the MP can report back to Parliament.
Honest talk challenges stigma
There’s information, but most is in print form and most people are not readers. The messages on the radio are being given by people who are not positive, so how can you attract a woman who is positive to listen to someone who does not know exactly what it means to live with HIV? They should put on people living with HIV, get them to come and talk on one-hour slots, talk about their experience.
I think this will also reduce stigma and violence, because I am sure that if men start hearing women on the radio talking about their experiences, they will start to understand why they need not to be violent against women. I think women in Namibia are not safe, because there’s a lot of stigma, there’s a lot of discrimination. Women really want to tell their status to their partner – of that I am positive – but they are scared of violence, of being beaten up, chased out of the relationship, so they would rather keep quiet and live with it.
We need our leaders to lead in the eradication of stigma and violence and to come up with positive messages about HIV and AIDS, not negative messages. They should go to the communities and hold meetings, not rely on the radio only, [but] go into the communities whatever language is being spoken and use that language. This is not happening at the moment.
And if some of the leaders know that they are living with the virus, they must come out and say I am living with the virus and I am living positively. People will listen to their leaders and because their leader is their role model, so the stigmatisation would be [reduced]. Because no leader has come out so they think that none is affected by HIV, but they are affected and they are living in silence.
Positive messages in the media are important
I think at the moment the media is coming up with stories that they get from other sources; they should invite people living with HIV [to speak]. Just put in something in the Namibian [newspaper] and say we are inviting people living with HIV to come to us or call us, so that we can put their stories in the paper, so that people can hear from people living with the virus.
People who are living with the virus can be activists, but we don’t have this in Namibia. Because the media is not participating fully, it only attends an event when asked… maybe World AIDS Day or [some other] function, but they are not really targeting people living with HIV like TAC is. I think [the media is] important as long as they bring positive rather than negative messages.
Lack of information can have devastating results
When we look at Namibia, there are no clinics specifically for women, for family planning, for reproductive health – there’s nothing at all. Clinics are a mixture – women and men, young and old – and there are no clinics where you can say I am going to a female gynaecologist and meet only women there.
I was doing the WHO ‘3 by 5’ questionnaire. In one group of nearly 40 women, I was asking them where they go for a pap smear. These were all positive woman, and they asked me: what is a pap smear? I was so surprised. And these are urban woman, so can you imagine women in the villages?
So I told them, we who are positive, we need to go twice a year to be sure – and they didn’t even know that there’s a cancer association; they didn’t even know that in some hospitals this service is provided, because no one in the hospital gives that kind of information.
So the leader of the group took 27 women the next day for pap smears and 25 had [HPV Virus] which can lead to cancer of cervix and one had cancer already. So you can see why we need female clinics to attend to solely woman’s reproductive health needs.
Be strong; go for testing; know your status
The first advice I would give women and young girls is: go for testing, know your status. If you are positive, know how to look after yourself, what steps to take; if you are negative then you need to stay negative.
Because it’s real, I am living positively with HIV and AIDS but it is a real tough thing to do and you need to be very strong. It is like you’ve lost part of your freedom because you can’t do all the things a negative person can do, you are so limited, so restricted.
And if they are sexually active then they should use condoms and they should influence their partner to be faithful. And those one who are not sexually active, encourage them and tell them the benefits [of staying negative].
I would use my own story – half of me is still in prison; this half is restricted from doing this and that. If I was negative, I could have enjoyed myself but now I am so restricted and have to watch whatever I eat, whatever I do…
[My husband and I] used male condoms… every time I used them I got a sore because of the rubber, so we tried female condoms which was OK, but it at the end we saw that it came off [laughs]. So I don’t know how safe that is… that is why I am looking forward to the micro-biocide development, I think that will be a… life saver for us, both male and female… if we were negative, we would do it every day [claps hands and laughs] but we are limited because I don’t want to use a male condom because of what it does to me and female condoms – we are not so sure [about]…
I think that is excellent for women to [choose to abstain] because they know what they are choosing. It’s like I was saying I choose to stay with my husband, because I don’t want to infect another person. So this one may have their reasons why they have chosen to abstain and it should be respected. But maybe one day you meet someone and you fall in love. It will be their decision again, so what I would advise them is that they must think carefully how to inform the other person that they are positive.
A future with everybody talking openly about HIV
What would I want to see in the future? What I want to see is people living with HIV, NGOs, CBOs, the Church, the government – everybody talking openly about HIV and AIDS – so there’s no stigma anymore, no discriminating and HIV/AIDS is taken as another chronic illness like diabetes, high blood pressure, whatever, and people are free to talk about it like cancer say. I would like to see everybody talking freely about HIV, because without us being activist about it, the stigma is going to go on…
My personal vision is to see myself being a grandmother [laughs]. Yes, and still strong. My vision is to see myself being the narrator of the HIV/AIDS epidemic. I would be telling the stories of HIV and AIDS because there would be a cure. And I’d be saying that this is what we went through…
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.