 Lauraine van der Merwe, a 44-year-old employee of Standard Bank in Pietermaritzburg is HIV-positive. She is one of the few white people in the country to come out into the open about her status. Van der Merwe, a mother of two children in their 20s, spoke to Philippa Garson about dealing with her husband's death, the challenges of being HIV-positive, her fear of ARVs and the fulfillment she gets from being a wellness champion.
How did you discover you were HIV-positive?
I found out in 2003. I was married and my husband (not the father of her children) began to get sick that year. He developed a lump on his face like a pimple, which just got bigger and bigger. It was a lymphoma. He told me from hospital that he was HIV-positive. After he died I discovered from his doctor that he had known about his status since the year before.
What happened after your husband was diagnosed with cancer?
He discovered in May 2003 that he had cancer and died in May 2004. He just got worse and worse. His CD4 count was 34. He had peripheral neuropathy, TB and cancer and was bedridden for the past four months. When he was in hospital they put him on ARVs but it was too late. If he had said something before he would still be alive.
How did you feel about the fact that he kept his status from you?
It was very hard at the beginning but I made a promise to God that for better or worse I would forgive him and I looked after him throughout it all.
Did you want to know how he had contracted HIV?
I asked him a number of times but he never told me. Although he had taken drugs long before he met me he said he did not get HIV that way. It didn’t matter too much (how he got it). He had it and how he got it didn’t change that fact.
 What about yourself?
When he phoned to tell him his status in May 2003 I already had a strong suspicion. I thought I was going to die and that there was nothing I could do about it. I told my daughter and my sisters and brother. They were very upset but they were supportive. I lay on the sofa all weekend thinking I was going to die. On the Monday when I wasn’t dead I said, ‘Let me do something about it’. I phoned Lifeline and then went to a clinic and did the test. They told me I was positive and I said I didn’t want counseling.
How did you react?
I already knew I was positive. If you’ve been with someone for nearly 10 years you know. I just needed confirmation. But it was a very big shock, even though I knew. But there was no-one to talk to about the disease. That’s when I went on an AIDS counseling course. I was on leave then because my husband was so sick. Then I decided I would go out and help other people because when I desperately needed help there wasn’t any.
What about work?
When I went back to work I was so scared to tell them. I told my boss and she was fine. When I told my colleagues they were hugging me and crying. I thought I would be shunned because that’s all you hear about.
Have your employers supported you?
There have been a couple of obstacles in my working life but the bank has shown concern for my situation.
After the counseling course did you start counseling people at work?
When I went back to work I asked to become a wellness champion. I did a wellness champion course and I’ve been doing counselling for the past three years. I find it very fulfilling. But people are not testing and they’re not opening up. There are one or two staff members who approach me but most of the people who talk to me are secondary staff like cleaners and security guards. The others are the customers. People hear by word-of-mouth that I am positive and that I counsel and they come and talk to me or I give out my telephone number.
Do you feel that you are playing an important role as a white person who is HIV-positive?
It’s very important for people to know that AIDS is not just a black disease. It hits everyone. I’ve been speaking to an Indian woman and I know about five white people who are HIV-positive. I’ve tried through Lifeline to start a support group for white people but they won’t come out. They are scared. Our family is very open and I am naturally open. Keeping secrets is not a good thing. I feel that the more people I can help the better.
How is your health?
I have low-grade flu symptoms all the time. Even before my husband got sick – about six years ago – I had these symptoms but it never struck me as HIV. I’ve had lots of problems with my chest – pneumonia – and have been to hospital a few times. But I also get reflux and since I’ve been on reflux medication I’ve been much better and I haven’t been back to hospital. Otherwise I’m fine, though I still have my off days and get terrible headaches. My CD4 count was 328 in December. I have to go back in May and I will probably start ARVs.
How do you feel about this?
I’m very scared of ARVs. I’ve been dreading the day I have to go on them. I’ve heard of so many side effects. But I’ve spoken to many African people who are on them and who don’t have any problems. I know a nurse who had a needle stick injury and went on ARVs. She complained of nausea for the first few weeks but then it went away. I need to start learning about the whole field. It changes so often. I had hoped that by the time I had to go on them they would have found a cure.
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