A positive attitude
For Gugu Xulu (31), 2005 was a dark year. First, she buried her boyfriend, the father of her child. Then, just days later she learned she was pregnant again, and also that she was HIV positive.
‘I remember I was really angry. I was a Christian and I had one boyfriend and he gave me HIV, and now I was pregnant with another baby,’ says Gugu who lives in Bethal and is now mom to two children aged 12 and 7.
By 2006 she started antiretrovirals (ARVs). In those days there was no one she could turn to with her questions or who understood the virus or the medicines she was on. Apart from the ARVs, she was on a host of other medicines ranging from asthma drugs to the heart medication that she had taken for years.
The ARV medicines wreaked havoc on her life in the beginning. ‘I got that buffalo hump and my body was just shapeless, people I knew didn’t recognise me even, the medicines made me look so different,’ she says.
During this period, Gugu happened on one of the Treatment Action Campaign’s talks in Bethal and realised she needed to speak out and help others. She understood their confusion and their challenges. She also understood the necessity for a positive attitude, to take steps to live a full life even on ARV treatment and as an openly HIV-positive person.
‘To build good relationships, your manner of approach is important; you have to fight in the right way,’ she says about winning over nursing and clinic staff. Gugu had to help them realise they were on the same side – that she was not just a watchdog but someone who wanted to help ease their load too by being another person patients could turn too.
Gugu is often seen in her distinctive HIV+ T-shirt in the streets of Bethal and in the local clinic waiting rooms. People approach her freely and she’s often asked to discuss HIV and ARV treatment to gatherings in the town. She says she knows it’s an important informal service for people.
As part of her work, Gugu interacts with traditional healers in the district, too, encouraging them to persuade their clients to seek medical help early on. ‘It is difficult when you are working with people who think they are bewitched – they stay in denial and go to a traditional healer instead of starting ARV treatment. Working with healers means getting them to understand that there is a role for them and for normal medicine and doctors,” Gugu says.
“Lay counselling and a network of support among those who are HIV positive is critical.”
Lay counselling and a network of support among those who are HIV positive is critical. Gugu says stigmitisation remains an issue, as does understanding the medication, the side effects of the medication, and the full consequences of not taking the medicines exactly as prescribed.
Gugu herself became eligible for the fixed dose combination (FDC) medicine in April. Taking one tablet instead of three is a relief for many patients, but Gugu knows that defaulting among many will remain a reality. There will also possibly be new side effects that she and others on the drugs will have to navigate.