I am Angel and I am from the southern part of Africa. I am 39 years old and this is my story. In 2017, I had a seizure for the first time and my friend called an ambulance to rush me to hospital. I had an magnetic resonance imaging (MRI) taken, and the doctors discovered a massive tumour near the right side of my brain. I was admitted for a week and prescribed seizure medication. During this time, they also discovered that I had type 2 Diabetes.
I was discharged after five days and they arranged for me to get a surgery date because the tumour was aggressive. They sent me home before this date was finalised. I went home. When the surgery date was arranged, this was in one of the major leading hospitals in Sydney.
The surgery on my head was serious and massive and successful. The doctors told me that, all will be gone after four weeks. When I went back for follow up, it was discovered that there was still some tumour remaining and I had to have radiation therapy which took eight weeks.
After being discharged from hospital, I was unhappy as I was alone at home and felt frail. I thought that they quickly discharged me because of my HIV positive status. I also felt stigmatised, because at my hospital bed before I am given medication, nurses will call and talk to each other, whispering before they give me my medication. I still wasn’t feeling better after the massive surgery. I felt I was discharged too quickly, and I felt too weak and too sick to be at home.
Before leaving the hospital, they arranged a Community Support Agency to visit me for three days a week, for 30 minutes to help me with home chores. Unfortunately, all they did was to watch TV and vacuum and asked me to sign the paper before they left. They also only visited me for six days in total and again I did not feel comfortable with their service. I felt I did not receive appropriate help and much needed assistance because of HIV stigma towards people living with HIV in our society. This stigma still exists through our nurses and doctors in hospitals. This happened in August 2017 and I’m still going for check-up and follow ups, today in February 2019.
It is scary for me given the tumour is stage two and I was told that, it might come back down the line. When it might happen is unknown and with my HIV status, I wonder how I will be treated again by different doctors and nurses in hospital, taunts me day and night.
Being HIV positive is scary but because of the good medication I see myself healthy as anyone else. Community Housing has helped me to be able to live independently with HIV. I’m absolutely happy to see there are HIV services where they offer people someone to talk to and counselling without being judgemental.
There are places like The Haven in Blacktown where we can do our shopping cheaper and have good lunch and have open discussion about our HIV status with others who understand. These services and organisations make me feel good and I have started to attend groups and events and make new friends. I have been able to find people who have the same HIV status as myself. Finding others with the same condition has helped me to be able to talk and the fear has subsided.
People living with HIV still need support and people who can speak up for us. As for me, I cannot be open because of stigma in our community and I am scared to be judged. I’m so really grateful of the support from Positive Life NSW, Bobby Goldsmith Foundation (BGF) & Pozhet. I’m so happy because when I’m struggling, they are there for us. It’s so wonderful for the help and support we get from this organisation. They are easier dealing with than our own community who are often set to only be judgemental and don’t contribute to eradicate or ENDING HIV.
Published for Talkabout Online #192 – March 2019
