Sunday Times (Johannesburg) - April 25, 2009
On Fire: Pinky Khoabane

In my search for answers, my ignorance - and that of friends whose relatives have died of the disease - was exposed

Until HIV/Aids knocks on your front door, it remains that faraway problem relegated to some remote place for those directly involved with this devastating disease.

And when it hits closer to home, it exposes ignorance, denial and hypocrisy.

Right about now, dear reader, you will be seething at my assertion and coming up with all the evidence to prove your understanding of this pandemic.

You will already be thinking about all the people you know, the friends who have HIV/Aids and all the information at your disposal.

Until three weeks ago, I, like you, thought I knew all I needed to know about HIV/Aids - until someone very close to me confirmed what I had suspected for some time: that she is HIV-positive.

She gave me the news in a very matter-of-fact fashion, and I responded with reciprocal calm.

I needed to know her CD4 count, the opportunistic infections she may have, and the medication she was on.

It was a very clinical discussion, which ended with my giving her the assurance that she could live if she chose to and that I was there to support her if she wanted to live.

There weren't any of the emotional outbursts that I had imagined would go into such a discussion.

I have always wanted to treat Aids like any other disease.

I have always been of the view that Aids was getting too special a treatment, to its detriment.

The counselling offered prior to treatment and the requirement for a patient's consent before blood tests are taken are just some aspects that distinguish this disease from others.

Think about it: how many times does a doctor ask you for permission to have blood tests or any tests done on you when you are sick?

He is assumed to be the expert, and he dispenses the medication and instructs you to undergo the tests that he feels will assist him in his diagnosis.

Then there's the much talked-about challenge with treatment.

It is argued that taking tablets at a specific time for the rest of one's life is a hindrance to patients sticking to the treatment programme. But all chronic sufferers face this challenge.

In the end, the patient has to make the choice to live or to die.

The few hours following my dear one's disclosure left me in deep turmoil, largely due to the many contradictions I was soon confronted with.

Regardless of the brave front I had put up when we had our discussion, and despite having friends who live with the HI virus and have lived with it for years, I couldn't help fearing for her life.

Despite the advances made in Aids treatment, I am still haunted by the emaciated bodies and sunken eyes of the image that has come to symbolise the disease.

It suddenly hit me that, 28 years after Aids was first diagnosed, we are still uncomfortable about discussing the disease. Yes, we read about it more and we even talk about it more, but it is on a very superficial level.

Notwithstanding my suspicions and the telltale signs displayed - weight loss and the dermatological problems that come with the disease - I was not able to ask her about her HIV status in the same way I would have if I had suspected her to be suffering from another disease.

And, despite having friends whose HIV levels are so low that the virus is almost undetectable, my brain remains preoccupied with deaths that run into millions as a result of the pandemic.

I wonder if she will be able to follow her doctor's advice, take her medication and refrain from behaviour that would be detrimental to her health.

I wonder if she will translate her stated will to live into practice.

And therefore, every now and then, I shed a tear for her.

In my search for answers, my ignorance, and that of friends whose relatives have died of the disease, was also exposed.

Whereas she and I were worried that the clinic hadn't put her on antiretrovirals, I discovered from a friend that her CD4 count of 479 was actually quite healthy.

I also learnt that ARVs are administered only in cases where the CD4 count is 350 or lower.

The face of Aids is changing: a sizeable number of people with HIV/Aids are returning to work and getting off the disability grants on which they once relied.

Many children who were expected to die before infancy grow to attend nursery school and even high school.

Adults whose hopes had crashed under the weight of what is considered to be history's most devastating disease begin dreaming again. They get married, start families and live again.

But our response is largely that of an outsider - an observer who stands several feet away from the disease looking in.

Until of course, we are confronted directly by the disease.

Perhaps a different approach - that would see the public volunteering to assist healthcare workers and meeting patients, who can share their personal stories and put a name, face and personality to this deadly disease - would go some way in ensuring that the next person who learns of a relative who has HIV/Aids has a better grasp of what they are dealing with.

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Always watch for outdated information. This article first appeared in 2009. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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