Battling through the stigma of HIV

I am advising others to test for HIV and learn as much about it if they do test positive. I nearly died leaving behind my precious children and family. My community has accepted me, I now volunteer as an educator at my clinic. Most people don't believe my story now that I am well.

I am Noncedo Nokuthenjwa Bulana. I am a mother of four children aged 15, 13, 10 and 9 years of age. I live in Site C Khayelitsha.

In December 2000, I was sick, I had flu and a headache and was loosing weight. From January to June the next year, I felt better, but continued to lose weight. I then developed thrush in my mouth and I tried using sugar to remove these marks from my mouth. My brother asked me to agree to an HIV test. He said he was advising me because of the symptoms I was having. I told him that I was not sick but I was going to make a traditional remedy to get better and I was thinking that the sickness was a calling to become a traditional healer. In my belief, when a person becomes thin we think it is an ancestor telling you to do so.

My brother persisted in asking me to agree to an HIV-test, even telling my mother. My mother then also began asking me to agree to the test. I lied to my mother saying that I felt well, at this time I was coughing daily and had no appetite for food.

On 21 September 2001, I also began to feel dizzy. At work that day, I tried to write and I could not finish the words. I was afraid and tried to call my mother, but couldn't remember the whole number. I also realised that I couldn't see clearly. I did not realise that I was very sick. I was lucky because at least I managed to arrive home.

My mother asked me why I arrived late, I told her that I could not see properly and that I was feeling dizzy. My sister told me that she tried to wake me following day for work. She said that I opened my eyes but did not say a word. She called loudly for me to wake up and speak to her, but I did not respond. My mother and sister said they took me to Site B hospital where I was referred to GF Jooste Hospital.

The doctor asked my mother what was wrong. She said she did not know. An HIV test was done without me or my mother agreeing to the test. I was tested HIV-positive, my mother was told while I was unconscious, today I still do not know who that doctor is. I awoke on 22 September, a Saturday night and my mother was next to me. I tried to speak but my mouth was tight, I tried to write but I did not know how, I cried, but I did not have any tears. On Sunday, my family visited me, but I could not speak to them.

On Monday when my family had left, I realised I could speak again and I started talking to my mother. I was confused at the time, but felt that my mother knew that I was HIV positive. I started crying, with tears this time, my mother consoled me telling me she still loved me. I was thinking of my children and asked my mother not to tell them.

On 28 September, I asked to be released from hospital as I was feeling better. I was being treated for TB. An MSF counsellor who organised transport for me because I could not walk called my mother. She asked me how I felt about finding out about my HIV status in this way and I said that I thought I would know on my own because I was afraid of the stigma. The counsellor told us about the MSF clinics. My mother and I both went. Soon afterwards, I was admitted to a TB hospital where I stayed for 2 months. I recovered and returned home.

In January, I had a mental disorder and was taken to another hospital, I was pining for my children all the time. The nurse said that I should try to be calm, that I should not think about death and that I would not die because there was something called ARV treatment.

I did not ask further about this. On 25 March 2002, I was discharged from hospital. On that day my mother took me to the MSF clinic where they seemed happy to see me again. My doctor took blood for a CD4 count and found that it was 75.

The next time he took it, it was even lower at 61. He started telling me more about ARVs and gave me a consent form to read. I read the consent form and decided that I did not want to take ARVs. I told the doctor this and he suggested I join a support group of people already taking ARVs.

I joined this support group and saw and listened to others taking ARVs. They were feeling great. I then told my doctor that I was ready to try. I finished T.B. treatment June 2002 and started taking ARVs. Since then, I feel healthy, can see better and have written this story for you today.

I started learning more about HIV and hung the posters on opportunisitic infections in my home. My children asked me about these posters and I started asking them what they knew about HIV. They knew much an told me that they had learnt these things at school. I then decided to tell the about my status. They were not shocked.

My elder son said that he thought about this because I was doing beadwork and he knew that support groups for people living with HIV/AIDS did this to earn a living. They asked about my treatment and since then they are encouraging me to take my ARVs. They told me that they missed me while I was away in hospital.

A year and two months after starting ARVs, my doctor told me that one of my blood tests showed that I had anaemia and that it was caused by one of my ARVs called AZT. I did not feel unhealthy, but I agreed that we should change the ARVs I was taking. If anyone feels that their ARVs are making them feel sick, please do not wait for your next appointment, but go as soon as you can to your clinic and explain what is happening.

My regimen has been changed, but I still feel healthy and in control of my life. My CD4 count is now 271 and my weight has increased from 47 kg to 73 kg.

I am advising others to test for HIV and learn as much about it if they do test positive. I nearly died leaving behind my precious children and family. My community has accepted me, I now volunteer as an educator at my clinic. Most people don't believe my story now that I am well.