My life with HIV

I was born in Zambia in 1973 and came to England in April 1994 to live with my cousin to help her look after her three children. Soon after, I had swollen legs and I went to accident and emergency where I was told I had an acute febrile illness. I was admitted to Queen Mary’s University Hospital Roehampton. In July 1994 I was asked if they could do an HIV test and I agreed. I didn’t know anything about HIV. Back in Zambia the word HIV was unspoken. I had heard of AIDS which I only associated with death. Three days later I was diagnosed HIV-positive. I was 19 years old when they told me and explained that I was HIV-positive. I was shocked, upset and I couldn’t speak to anyone. Later that day I asked myself why, why me?

When I was told, my auntie and my cousin’s husband were standing there and I could hear them say in my language ‘She has to go back home. Who is going look after her? Who will tell her that we can’t look after her?’

I just wanted someone to say to me that everything will be alright but no one did. The pain I felt in my heart grew stronger and the feeling I had, I knew, wasn’t good. I was lost and confused. No one asked me what I wanted. I needed my mother and father to be there. I started crying. I waited. I agonised with the thought of going back home with this family whom I could see didn’t want me there. To them I was a dead person walking.

I started worrying. When ‘my time’ came would I have anyone to sit at my bedside with me? Another worry was that being the first born in my family meant I was expected to provide for them. How was I going to tell my mummy, daddy, brothers and sisters when I go back to Zambia? Yet it became important to me to accept the situation that I am HIV-positive. I needed to be strong for my family and myself. Again, I kept asking myself, 'why me?'

Finally, my aunt made the decision that I would go back and live with them. This was on the condition that I would not talk about my illness nor my feelings. At the same time the children would have returned to school.

I started seeing my consultant and a health adviser at a clinic in south west London. At first, appointments were weekly, then monthly. My CD4 count was 460. In January 1997 my viral load was tested for the first time and it was 750,000 copies/ml. I was told that such a high level suggested I was at risk of becoming ill because of HIV in the near future. In February 1997 my doctor from the clinic phoned and asked me to come in and see him. I asked why, and was told it was time to start taking anti-HIV drugs. I remember falling down on the floor with the phone in my hand. As I was having lunch with my cousin and the children, my cousin took the phone from me and started talking to my doctor. The silence, sadness, everything came back again and the things I wanted to stay in the past started to invade my thoughts and were here again with me in the future.

The thought of taking the medication every day of my life was like the feeling of drowning. I felt the pain coming back again and I was in shock.

Later I gave myself a good talking to, and made the decision to accept and start taking the medication. Unfortunately, I started having side-effects, feeling tired all the time but worst of all I couldn’t tell anyone how I was feeling. I kept waiting for someone to talk to, but the pain inside me was growing every day.

Living with HIV changed everything in my life. In late 1997 I moved to central London and registered at a new HIV clinic. In 2000 I developed resistance to the drugs I was taking. I had a break from the drugs between November 2000 and November 2002. Then I started taking different medication and again started to have side-effects. I was feeling tired, dizzy, with diarrhoea and nausea. I changed the drugs again. I had a different set of side-effects. My stomach grew and I looked like I was pregnant. I didn’t like it. Once when I was on the bus someone offered me a seat and said ‘in your condition you shouldn’t be standing, have a seat.’ I was upset and looking at this person I said ‘no thank you, I am not pregnant.’ Everyone looked at me. I could feel what they were thinking and saying in their hearts. After that the feeling I had wasn’t good and I started crying. I felt pain, hate and anger every time I thought about HIV.

Now I know I am not alone. I have support from other people and I give support to others as well. I think living with HIV has made me stronger and I believe that once I accepted it and learnt to move on, life became easier. But I have to say I wouldn’t wish this on anyone in the world. I think being HIV-positive made me not want to be in a relationship with anyone, but yes, I would like to find someone who will accept me for who I am.

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.