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Living with HIV

All of the narrators are affected by HIV in some way. Most are HIV positive and living openly with their status. Some have experienced opportunistic infections such as TB or pneumonia.

Each of the testimonies tells a unique story of how the narrator heard about HIV, what prompted them to go for testing, how they responded to the diagnosis and how they have been able to cope.

Many of the narrators describe initial feelings of sadness, fear and despair. Through access to more information, ARVs as and when needed, and identifying support networks, the stories move on to inspiring glimmers of hope and survival.

Life is tough

Life is tough – it is like you see a thorn there and you go and step on it by yourself. When I got infected it’s difficult to live with it, because the people who were supposed to help you in difficult times don’t want you, there’s no one who wants to help you. Even you yourself don’t feel well in your heart.

Life is real 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 already dead. I am only waiting to die, there’s no hope…

The first group that I attended was at Lironga Eparu. It is where I met people who are like me, who are also positive. It was my first time and I never saw something like this before and it encouraged me to know that I am not the only one – we are many.

Maria (female), member of Lironga Eparu, Namibia

HIV positive?

I’m HIV positive. I was tested on 14 November 2002. I did a rapid test and I immediately tested positive after I had an infection in my kidneys.

I was aware of HIV/AIDS because I was working at the local hospital at that stage. And I saw a lot of people dying. The first person I saw who died was actually five days after my diagnosis. And that gave me a real fright because I didn’t want to die like that.

That was when I attempted my second suicide. It was a very hectic time for me. I ended up in hospital four times [because of] trying to take my own life and in psychiatric institutions four times because I wasn’t myself. I was shocked – I don’t know, I can’t describe myself at that stage.

Male, member of TAC, South Africa

I was seeing my funeral in front of me

That my son and I, we are HIV positive, now what? At that moment I said to my son – you know my son was about one year and six months – I said to him “Forgive me”, and I told him over and over “Forgive me”. I was so emotional and in my mind I was like, we are going to die – because I know nothing about HIV. But when will I die, when will it happen?

There were times when I was just sitting – I didn’t want anything to do with my husband. I was sometimes seeing my funeral in front of me. My son’s funeral was there too sometimes.

I asked the Lord why he did this to me, why not to someone else? And it was just like I had to go on, you see, it is not something that happens today and goes away tomorrow. It stays with you. I realised that I was very cross but that I am not going to die today. I can still go on, you see, I can still move on.

Female, member of TAC, South Africa

I have to educate myself

I take things the way they are. I learn to live with what I have; and what I don’t have, I don’t. A ‘life’ of living positively. A life where I have to educate myself about these issues of HIV and AIDS.

Female, member of ICW, Namibia

Disclosing to God

The first, the very first person I tell is the Lord. That’s the very first person I share [my status] with.

Female, member of ICW, Namibia

Living very very positively

First of all I want to tell you that my name is Jennifer Gatsi Mallet and I am a 48 year old who looks 16 years old and I am living with HIV for 15 years now and I am living very very positively with it.

Female, member of ICW, Namibia


Living with HIV is a key theme of the Speaking freely on HIV oral testimony project.


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