HIV Australia | Vol. 9 No. 2 | July 2011

In 2010, AFAO conducted a series of interviews with HIV-positive African Australians, in the lead up to a forum by and for African communities to discuss issues related to living with HIV in Australia. All names and identifying details have been changed.

My family moved to Australia over 15 years ago. Prior to our moving to Australia, my husband fell ill for almost three years. We assumed he was suffering from malaria so he never went to hospital. 

For many years we did not have an intimate relationship except when I became pregnant with my last child. I started noticing my husband’s interest in spending time with his male friends and I suspected he was involved in some sexual activity with men. I did not confront him with this issue as I was afraid of how he might react, but after moving to Australia we decided to end the marriage. I moved to a women’s refuge. It was then that I learned about HIV risk among gay men. The women at the refuge asked me if I wanted to take an HIV test. I did not think it was necessary. However, since it was free, I decided to do the test. 

When the doctor told me I was HIV positive, I crumbled to the floor and was laid to rest for two hours. I told the doctor my fear that people would not want to touch me if they knew I was HIV positive. I was in extreme shock and felt paralysed. The doctor reassured me and gave me a hug to demonstrate that I would not infect him. 

In spite of that, I was afraid that if I stayed at the women’s refuge I would infect the other women so I decided to move back home and live with my husband even though I knew our relationship had become sour. 

I told my husband that the doctor had advised that the whole family should be tested for HIV. He tested HIV positive and so did my three year old daughter. My daughter had become infected when I breastfed her. I was even more angry at my husband because I felt he should have told me he may have been ill and I would not have breastfed our child. 

The past fifteen years have been like hell for our daughter. She has suffered at the hands of many school teachers. As soon as we told them she was HIV positive, she was treated very differently. The teachers’ attitudes changed towards her. It did not help that she was the only black student in her school and many times teachers would make reference to diseases and poverty in Africa. 

One time I attended a function at her school. During lunch, I saw all the children in my daughter’s class go to the back of the classroom and pick their lunch boxes from a box. I wondered why my daughter was walking outside the classroom. I followed her outside. She told me that her teacher had told her to put her lunch separate from the other kids. I could not believe what I heard. Because my daughter was HIV positive, she had to keep her lunch outside the classroom in the sun. 

I have never been so angry in my life. If it were not for God, I would have attacked the teachers. I told the teacher that if she did not want my child to attend her school, all they had to do was tell me and I would remove her from the school. We moved her from school to school and eventually moved to another state. The treatment and stigma she experienced as a HIV positive African in the Australian education system has been intense. Today she suffers from phobia, panic attacks, anxiety, depression and low self-esteem. 

When my daughter started being ill and had to miss school we had to tell the teachers at her new school that she was HIV positive and needed treatment. By that time education policies had changed and because there were other HIV positive children within the education system, my daughter and the others were treated well. 

During her high school years, my daughter told me she was taught in school that HIV is a horrible disease. Looking back, I wish the education was delivered by a healthcare worker who would be more sensitive to that fact that there may be HIV positive students in the classroom. My daughter almost had a nervous breakdown during this period. Her anxiety levels increased significantly. It reached a point when she could not ride the bus to school. 

For many years my daughter was healthy and held a full time job. She decided not to disclose her HIV status at work. She works in an organisation that provides services to mentally ill patients, yet she is also a client of the organisation. On several occasions, she has asked her employer to remove her HIV positive status from the database as any staff member can read her medical history. The organisation refused to honor her request. 

A few months ago, my daughter’s cd4 count dropped to 18 and she developed a skin condition. She was hospitalised. When she returned to work, she noticed that her colleagues’ attitude towards her had changed. They all knew she was HIV positive. One day she came home from work crying and said, “Mum, no one at works wants to touch a pen or paper that I have touched. No one wants to sit on the same chair that I have sat on.” If I was not a trained psychiatrist, my daughter would have committed suicide.

We decided to take the matter to the anti-discrimination commission. It was very difficult finding a lawyer to support us by providing pro-bono services. We had to pay our own lawyer. We won the case and my daughter was compensated. 

Due to the effects of the illness and treatment, it is now very difficult for my daughter to work. I wish HIV positive youth could be placed on disability and receive some financial support. She has developed lipodystrophy (abnormal fat redistribution) as a side-effect of her HIV medication. Her body is disfigured. Now I have the burden of paying a lot of money for surgical reconstruction of my daughter’s body. 

One other problem we have is the lack of reasonable premium health insurance for HIV positive people. When my daughter’s CD4* count dropped to 18 and she needed surgery, we had to wait over four weeks for her to be admitted. If we had private health insurance I would have taken her immediately to a private hospital and she would not have had to be in pain for four weeks.

Read other stories from this series

Lola's story

Okello's story

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