Real Life: “My husband gave me HIV”

Ugandan-born Eva Nakaye, 29, tells VIVA about her life with HIV and her hopes for the future
Thursday , 14 July 2011
Eva with her youngest daughter, Nakitende Maria
Eva with her youngest daughter, Nakitende Maria
Eva can now support her family by herself
Eva can now support her family by herself

“'Mummy, please don’t die.’ The words echoed through my head as I tried to convince my three young children that everything was going to be OK. My 12-year-old daughter stared at me, her eyes wide and filled with fear; she didn’t understand why I might not be around for ever. She didn’t realise that nothing in the world would make me leave her, or her two sisters, by choice. But it wasn’t my decision to make. I had just discovered that I was HIV positive. A virus inside my body was eating away at me and there was nothing I could do about it.

I grew up in a small village in the central region of Mityana, in Uganda. My mother died when I was 10 years old and, consequently, the responsibility of supporting our family fell to me. Back then, little was known about HIV and AIDS. There was no knowledge of it in Ttanda Parish, where I’m from. So when my father arranged my marriage when I was just in my teens, the danger of HIV never even crossed my mind.

The man I married was called Mutyaba Ambrose. He seemed like a good match as he was slightly older and had a farm. I knew he would be able to take care of me and my family and, in the early days, life was good. My husband, although a stern man, lived up to his promise and supported all of us – for the first time since I was little we felt cared for and protected. When I was 17, I had my first child, a daughter called Nanyonjo Brenda, now 12. Two more daughters followed, Nabatanzi Olivia, now aged seven, and Nakitende Maria, aged three. By this time, news of HIV and AIDS had reached my village, although many details about it were still unknown. It was the kind of thing that people whispered about, but it was never really out in the open. Those who were diagnosed as positive with it were quickly outcast. It was seen as a dirty disease, something to be ashamed of.

In 2005, a UK charity called STAR came to our village to talk more about the HIV epidemic and, by 2007, they were regularly holding meetings in a nearby clinic. The aid workers and doctors explained the causes and dangers of the infection and, like most people, I didn’t think I had anything to worry about, but decided to have a blood test just to be sure. It was free and I figured it couldn’t hurt. When I went along that morning, it really wasn’t something I was thinking about that much.

The awful truth
I got the results the same day and in that split second my life changed for ever. The doctor looked at me and, without flinching, he simply announced; ‘Eva, I’m sorry to tell you but you are HIV positive’. As the words rolled off his lips, I broke down in tears and was catapulted into a state of shock. All I kept thinking was ‘this can’t be real, how can this be happening to me?’

With little knowledge about the virus, I thought I was about to drop dead immediately. In my head, having HIV meant I was going to die any moment. My first thoughts were for my children – would I even make it back home alive to see them one last time? I also wondered if it meant they were infected. Would they die too? All these thoughts were swirling around in my head and I couldn’t make sense of any of them. And, of course, I had the added fear of how on earth I was going to tell my husband. He’d refused to be tested, and I knew that he would never acknowledge having the infection himself. Distraught, I left the clinic and cut all contact with STAR, who had offered me further support and help. I don’t know why – I suppose I just went into complete denial.

Walking back to my house is a blur; I think I went into autopilot as I slowly made my way home. By the time I’d reached my front door I’d gone from a shaking, crying wreck to a calm and composed woman. I prepared dinner for my family just as I always did and pretended nothing had happened. ‘I’ll think about it tomorrow,’ I told myself. But a day later, I still couldn’t face it. I was terrified of my husband’s reaction, the shame I’d bring to my village and, most of all, I feared for the health of my children.

As the days passed, I busied myself with all the usual mundane chores. But I’d often find myself transfixed, just staring at my three girls as they laughed and played together. They were so precious and the thought of not seeing them grow up tortured me. ‘Who will look after them?’ ‘Will they be happy?’ and, my worst thought – ‘What if they have HIV too?’ – was all that filled my mind as I lay awake at night, praying that this just wasn’t happening.

I kept my secret for three months until I knew I couldn’t hold it in any longer. It was eating me up inside. One night, I blurted everything out to my husband and, just as I predicted, he was furious. While I tried to reason with him, explaining that he was the only man I’d ever been with and, therefore, the infection must have come from him, he refused to accept that he might be responsible. While it made me feel resentful towards him, his reaction didn’t surprise me; any admittance on his part would show he had a weakness, which was frowned upon in our community.

Facing facts
A few days later, a member of STAR came to see how I was doing as they were worried they hadn’t seen or heard from me since the diagnosis. She explained that the group was there for me if I needed advice or support and, for the first time, I didn’t feel completely alone. She also explained that, while I was HIV positive, it didn’t mean I was going to die tomorrow. Just when I felt like my only option was to surrender to the illness, she gave me the strength to carry on.

STAR referred me to a clinic where I was given anti-retroviral drugs to help me fight the infection. Weeks later, with the group’s support, I broke the news to my children. Telling them was one of the hardest things I’ve ever had to do. Tears poured down my face as I explained that I had an illness and that it was incurable. I told them that I wasn’t going to die, but that I’d need to take drugs for the rest of my life. My youngest daughter was only three years old, my eldest, trying to put on a brave face gulped down her tears and said, ‘Well, we’ll help you Mummy. We’ll make sure you never forget to take your drugs’. We spent a long time in that room, just crying and holding each other.

The next day, I took them all to the clinic to be tested. When the door opened and a doctor came towards us, she smiled. ‘All three of your daughters are HIV negative,’ she said. I let out a huge cry of relief. They would grow up, get married and grow old. My babies were going to be okay; they had been spared.

Throughout all of this, my husband’s denial lay heavy on my mind. He still hadn’t been tested himself and our relationship had, understandably, grown more strained. He didn’t seem to care what I was going through, which made me feel angry towards him. But, because he spent long periods of time away from home, it became easy to ignore our marital problems. It wasn’t until a year later that he started to come round and ask me questions. Using all the information I’d been given by STAR, I told him that he was likely to be HIV positive, but that, while it couldn’t be cured, it can be treated. HIV didn’t mean immediate death anymore. He accepted what I was saying, but he still didn’t go for a test.

A family death
In early 2009, my husband passed away. It will never be known if he died of AIDS or of something else, all we know is that he became ill very quickly and died suddenly. While I mourned his loss, I couldn’t stop thinking about how I was going to support my family without him. STAR drew up an action plan and set me up on an income-generating project run by a partner of ActionAid. Through the project, I’m given 10 litres of milk a day, two for my family and eight litres to sell at the local market.

My first day at the market was terrifying. Everyone in the village knew about my infection and I was sure they would treat me like an outcast. But after one woman came and bought some of my milk, others followed. Before I knew it, all my supplies had been sold and, instead of turning away from me, my village were giving me their support. As one member of STAR pointed out to me later, I was no longer the only person living with HIV in the village – it was becoming more and more widespread.

Selling milk has given me a sense of purpose again. I’m able to support my family, which has really boosted my self-esteem. And my children kept good on their promise to help me; they nag me every day about taking my tablets! While I don’t know if I’ll live to see them grow up, I'm going to do my best to prolong – and enjoy – my life as much as I can...”