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Namibia | Maria: information is essential

When Maria was diagnosed with HIV her family rejected her. “They wanted to separate themselves from me.” And although she received some help from her priest and neighbours, she still felt isolated. “In the north [of Namibia]… there was no support group, there was nothing, you keep your status within yourself…”

Maria moved to Windhoek and found the Lironga Eparu support group. She says: “It has brought a lot into my life. It has helped me to accept my situation…and to know that…I can survive with the virus for a long time.” She now visits companies and schools to give advice about HIV.

She feels that providing information is essential and that the media is doing a good job, but says people “don’t want to change their lifestyles” and many still fear speaking publicly about their status. She praises the government for their policy towards ARVs, but wants more to be done to tackle discrimination.

I was born in Owamboland in 1974. I grew up and went to school there…[but] I didn’t finish my schooling…because there was no one who could help me…with my school fees and my school needs.

‘My family chased me away’

I have one sister and one brother…. My mother is still alive and my father died in 2002. But during my childhood they were not together…. At one time our relationships were real good, but when I was diagnosed with HIV that changed…. In the family it was I who disclosed her status [first], and when I told them they wanted to separate themselves from me.

When my family chased me away, I went to my grandma’s house. [But] my grandma is not capable of helping me – she is blind – and one of my mother’s sisters was looking after her. She was almost the same with me…. She also stigmatised me – that is how I was suffering….

Life is tough…. It is as if you see a thorn and you go and step on it by [choice]. There’s no one who would think of doing that! It’s just that I fell into an unlucky situation, and I got infected with the virus. It was difficult…

When you are in difficult situation and…you can’t handle it by yourself, you need people who are going to help. But when…the people who are supposed to help you…don’t want you, and there’s no one who wants to help you, it is just you [alone] – and you don’t feel well in your heart. Life is real tough.

A distant son

I have one child, a boy. He is 13 years old [and] living with my mother. Because the child is with my mother…even if he wants to see me, when he comes they say bad things to him: ‘Where did you go, why did you want to go there?’ Things like that….

I think that he knows [I am HIV positive] because he hears when they gossip about me – I won’t say that he [definitely] knows. I think he saw the condition I was in when I was sick…. I was real thin at that time.

Becoming infected

[The person who infected me] is now dead. The story went like this…. Before I had a relationship with him, one of his girlfriends who lived with him…was already sick. [But] when I came to know about it…from people talking…it was too late. It was difficult. Even though you have not gone for testing, you already know that you are infected with the disease.

In 2001 my body was starting to lose strength, and I was losing weight…they found out that it was pneumonia… They gave me pills [but]…I just got sicker and sicker, and I decided to go north to Owamboland. When I went to Owamboland I became even more sick… At the hospital they…found pneumonia again, and they put me on treatment for…six months. After that my lungs had recovered, but while I was sick they had decided to take a blood test for HIV.

‘There was no information’

It was the doctor’s orders: the doctor wrote on the hospital card ‘Do counselling’… then the nurse told me to go to another room… After the counselling session I agreed to do the test. There was no time to refuse…and I already knew I was infected… The girlfriend of my partner had died in hospital…

[Getting the result] was tough, it was very tough…. You see, there’s no hope. You only think that this is it, I am already dead, there’s nothing I can do…I am only waiting to die, there’s no hope.

They gave me further counselling, and [the counsellor], she really helped me to accept the situation which I was in… [But] there was no information. You are hearing stories like ‘you will die’. There was nothing like ‘you can survive for more than 20 years with HIV’…nothing like that.

Supportive priest and neighbours

I first called the priest together with my family, and I disclosed my status to them…. The pastor was hopeful, and…he also helped me with spiritual things…. The church is trying to fight against stigma and discrimination, and also encourage you that you are still a human being. Jesus Christ loves you…

[And] I do thank my neighbours. They used to help me, here and there, although they couldn’t give me all I needed because they also had their own family. And I want to thank one girl from our village who is also HIV positive – I see her as someone who used to really help me. She used to buy me soap, and even lotion…to keep myself clean. There was no such help from my own home.

Her partner dies

Before I went [to Owamboland], he and I were already separated, because he used to run around with women and was also drinking, and when I told him to use condoms he didn’t want to.

When I came back to Windhoek – I went to Owamboland in 2001 and stayed there until 2003 – I asked some people who were close to him about him and they told me that he died some time ago….. After I heard that I went straight home and into my room, and I went under the blanket and covered myself because it moved my heart.

Moving south in search of support

In the north, in Owamboland, there was no support group, there was nothing, you keep your status within yourself… You will not find anyone with whom you can share information or ideas about HIV and AIDS… There’s nothing you can do, you just wait and see whether you are still breathing. You see that today the sun has come up [and] today I have woken up…as long as I see the sun, that is fine with me…

I came south to Windhoek and stayed with one of my friends… We were trying to find the Catholic AIDS Action Support Group. We went to many different places… [and then] I realised that I didn’t have the money to go to and from town, and I heard that Lironga Eparu had a [closer] office, near Katutura…but I could see no such place…[Then] one day, I heard on the radio [where it was].

‘We share ideas’

Lironga Eparu was the first support group that I attended… It was established by someone who is living with HIV. It is where I met people who were like me – who are also positive. It was my first time and…and it encouraged me to know that I am not the only one, we are many.

It has brought a lot into my life. It has helped me to accept my situation and to know that I am still a person like other people and that…I can survive with the virus for a long time.

We share ideas…but even though we are open to each other in the group, we can’t really be that open, especially when there are men around… Sometimes, as a woman, maybe I am having a problem with my reproductive health, but I can’t really talk about that in a [mixed] support group. When there are men, it’s a bit embarrassing.

I go to companies and schools and also talk with friends [to give advice about HIV and AIDS]. Sometimes I go to a certain company, and we give a chance for questions, but sometimes people are ashamed to ask certain questions, especially when there are many people. But if that person keeps quiet, he or she won’t get the information that they want.

Discrimination, government and the media

The media are really trying their best…to give information about HIV and AIDS to the nation. But the people themselves, they don’t want to change their lifestyles. The media is trying the best they can… They are really giving information, through the TV, newspapers, and also through the radio.

It is difficult for some people [to express themselves in the media]…. People are afraid of being discriminated against and stigmatised. There’s a possibility of being thrown out of the house, or that people…will not associate themselves with you again and will stop being your friend….

There’s a lot of discrimination…. The [media] must continue to give out information, and government ministers must take responsibility – they must also try to go and talk to some people’s families… Some people are being rejected because their families don’t have enough information. And there are families who reject because they don’t want you – they really don’t want you, even if they do have enough information, they just don’t want you.

Future hopes

I want to see myself in good health, and also working for myself, earning my own salary… I have [never worked], just on a project for income generation with Catholic AIDS Action…. I used to get help from [organisations like] the Red Cross Society. The Red Cross used to give us blankets and food, but now I see that maybe they have stopped…the Red Cross food was only given at the end of the year.

I want to see a cure for HIV and AIDS around the world. I want to see people who are not infected look after themselves so that they do not get infected with the virus. And I want to see people who are positive behave in such a way that they don’t infect others who are not positive.

I want to thank all the NGOs that are helping us, and also those people who take what they have and give to people who are suffering. I also want to thank the Namibian Government for giving us ARV treatment. I believe that the government has done its best, because…some of us are poor, we don’t have jobs; we cannot buy ARVs for ourselves because they are expensive. The government has tried to give them to us, so that many people’s lives may be saved.

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.

Project

Namibia | Maria: information is essential is produced as part of the Speaking freely on HIV oral testimony project.

Testimonies

South Africa | Gerald: sharing the burden

South Africa | Jo-Ann: joining the struggle

South Africa | John: a loving family

South Africa | Nomafu: encouraging others

South Africa | Patrick: beauty in equality

South Africa | Sylvia: anger to acceptance

Namibia | CJ: fulfilling our potential

Namibia | Karolina: bringing me peace

Namibia | Jeni: leaving stigma behind

Namibia | Maria: information is essential

Key themes

Introduction to the project

Hopes and visions

Challenging the government

Working with the media

Support through community

Why join… or start a movement?

Living with HIV

Gender dimensions

Identity, culture and context