Thami Xakalashe’s eyes widen when I ask her if she thinks about the future and I get the sense I have stepped too boldly into her interior world. “Yes a lot,” she answers. Thami is HIV positive and has been on antiretroviral treatment since September 2006.

The first thing she says when she gets into my car outside Time Clothing where she is a supervisor is that she is concerned about her CD4 count which is lower than she thought it would be. She has been on TB treatment and has missed a week of treatment and she didn’t think her count would be down by that much.

Yes she knows she is not supposed to miss even one day of treatment but life happens, but now she knows how important the treatment is to keeping her CD4 count up and she has also learnt that TB treatment impacts her CD4 count.    

Thami and I met through the Siyakhana project which provides companies in Buffalo City with a comprehensive HIV and AIDS counselling, testing and treatment programme for employees and their dependants.  Its timing in Thami’s life has made a significant difference to her journey as a person living with AIDS.

Thami’s choses the Mdantsane Mall as a good place to chat and before we sit down at a restaurant she insists on giving me a guided tour of the toilets. “Come and see them, they are really nice.” I later reflect that a toilet isn’t a convenience that is equally shared in South Africa, and a tiled one in shopping centre close to home does bear mention.  

Over the meal she shares her story with such candid openness and deep laughs it becomes one of triumph. I honour her bravery because for now as much as we need to normalise AIDS as a chronic illness like any other, it is not. It remains steeped in shame, stigma and denial and Thami’s openness it one of thousands of steps needed to take HIV and AIDS to where it needs to be – a chronic illness just like any other.   

“I had been experiencing head aches, boils and often had flu. I had also had lost weight and a friend suggested I go for an HIV test. For six months I was very scared and didn’t go but then I went. I learned in June 2006 that I was HIV positive. I told my sister and a friend straight away and then told the HR person at my work. The day after the test I had to go for a blood test and I told my team at work why I had to go. Many cried and I said to them they shouldn’t cry because I was not crying.

“My CD4 count was 41 and they told me at work that the company was part of the Siyakhana project. I like everything about the project, there is free treatment with doctors and free counselling. When I started treatment in September 2006 my CD4 count was 31. Living with AIDS has changed my life a lot, before I learnt I had AIDS I used to party quite a lot and now I must look after myself very carefully. No drinking, no smoking, enough sleep. Take meds on time and correctly. Sometimes on a Saturday night I feel depressed and I can buzz their counsellor and she will reach me on a Monday and I can talk to her in the language I prefer. I talk to Brenda.

 “Firstly when I learnt I was HIV positive I was very angry and I know if I had had to wait for public sector treatment I would have waited longer and would have got sicker. But Siyakhana made it easy. Besides a rash I haven’t had any side effects from the treatment. There are times when I am alone at night when I think if only I hadn’t done things that way, but it isn’t helpful, it will make you depressed which will make you sick.”

Thami makes good use of a network of support which includes a friend who is a nurse at Cecilia Makiwane. “She does research about things I want to know. I have friends and my sister who console me. I have also had good support from my production manager and supervisor at work, Debbie Els. She is there for me. ”

As part of the Siyakhana project Thami is a peer group educator at her workplace and encourages her colleagues to know their status so that if they are HIV positive they can begin treatment as soon as it is indicated. For her the key to preventing HIV infection is education. “Lack of knowledge is the biggest problem.”

Peeping out tentatively from Thami’s decision to be strong and live carefully is her concern that she still hasn’t told her 18 year old son who is doing Grade 11 that she is living with AIDS. When I say we can hold her story for as long as it takes for her to tell him because we agree it is better he knows from her she says.  “I will tell him. Do you have any advice?”  

I ask if she would tell him about an illness that didn’t carry the shame and stigma associated with HIV an illness like diabetes or tuberculosis. She contemplates it and says: “Yes, I would.” Her son is writing exams and the holidays seem a good time to tell him. My guess is he already knows and is respectfully waiting and possibly comfortable keeping the reality of life with mom living with AIDS in abeyance.

We contemplate whether he may know already and is waiting for her to tell him. “Yes he sees me take my treatment, I must eat every morning before I take my treatment at 07:30 and he always says what a big appetite I have and I tell him I must eat before I take my treatment. He doesn’t ask what it is for.”

Since being on treatment Thami’s CD4 count has been over 400 but recently with the TB treatment and possibly the interruption of treatment it was down to 280. She feels well again, she looks well and is dreaming of the future, one where she drives herself to work and lives in her own home. “I would really like that. I must do it,” she says.