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KHOPOTSO: Memorial services and funeral gatherings are an almost daily occurrence these days, largely due to the HIV and AIDS epidemic. The deceased for whom this particular memorial service was held was a well-known HIV/AIDS activist in her community. Yet her HIV status remained a well-guarded secret until the very end and I am still not able to disclose her name.

HIV/AIDS ACTIVIST: Actually, that was not disclosed to us. So, I cannot comment on that. Her health deteriorated until she met her death today.

KHOPOTSO: A fellow activist in response to a question about the deceased’€™s HIV status before she died. It was very clear in the months leading up to the deceased’€™s passing on that she was gravely ill. She gradually lost weight, coughed incessantly and was always very tired. Colleagues tried to help.  

HIV/AIDS ACTIVIST: I tried myself to talk to her’€¦ But the results I did not know. If we send a person to be counselled we don’€™t usually go after it ‘€“ searching for the information whether the patient was HIV-positive or negative.              

KHOPOTSO: If the young woman was HIV-positive and knew about it, it can be argued that it was her right to withhold the information. Yet she implored others to find out about their own HIV status, to speak out if positive and to seek help. She knew that silence was never a good option. Sadly, many choose to be silent ‘€“ to the grave.                              

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KHOPOTSO: A friend recently died. Her symptoms included a cough that lasted three years and a very rapid weight loss. Family and friends were concerned. But no matter how much they encouraged her to seek medical help, the advice seemed to fall on deaf ears. As the chronic cough and weight loss worsened, she was asked if she was

HIV-positive. No, ‘€œit was chicken pox’€, she would say. It was not until a few weeks ago, when her condition forced her into a hospital bed for the second time after being discharged a mere two days earlier, that the truth became known.

A doctor’€™s report was found among some of her documents. It said she had a CD 4 count of only 4, meaning her body’€™s defence mechanism had collapsed.

She had full-blown AIDS. While in hospital she was diagnosed with meningitis. She was kept in an isolated ward away from other patients. I visited her. Family and friends also visited her. We saw her head. It had patches all round. She scratched and scratched and scratched. Later, she would see visions and scream pitifully and then throw herself to the floor. Two weeks later, she died – without telling anyone that she had AIDS. Sadly, this is becoming an all too familiar story.

HIV/AIDS ACTIVIST: That is the case with many people, you see. They think that when you are having the disease, people already know that you have been going around, you see. That is where the stigma comes in’€¦ This is not something that is dirty.

Our people think one thing: that they got HIV and AIDS because of sex’€¦ That is the problem with us here.

KHOPOTSO: Twenty years into the epidemic, levels of literacy and understanding around HIV have improved. But more still needs to be done to eradicate the stigma ‘€“ a major stumbling block to personal acceptance and tolerance by others. Stigma can prevent people from taking their antiretroviral medication regularly and can actually prevent people from even starting to take the medication. Both these situations can possibly result in severe illness and premature death.    

HIV/AIDS ACTIVIST: If you are positive or you are already ill, it’€™s just like a person who is having diabetes. You are going to take the treatment until you die. Even with HIV and AIDS, you take the treatment until you die’€¦ Ours is to tell our people that: just like all the diseases this is not something that is dirty.                            

KHOPOTSO: Help is available, but many still fear asking for it. Others are simply ignorant. As a result, there are still those who continue to die a death that could have been prevented. Hospitals are inundated with patients who present with the late stages of HIV infection. One nurse sums up her experience thus:

NURSE: These days, really, I think it happens to every nurse – we don’€™t enjoy our work as we used to do before because now, every now and then there is death’€¦ You know, when you are a nurse you become happy if you cure a patient and you can see he’€™s alright.  

KHOPOTSO: It’€™s a painful story that never ends. It begs the question: What are we not doing right to get rid of the stigma and the silence?