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HIV: Dignity and disclosure
Fungai Machirori
February 26, 2008

A bus driver and one of his passengers had the following conversation as they waited for the vehicle to fill up:
"I-d rather die in a car crash than ever die of AIDS," said the passenger.

"Why?" asked the driver.

"At least if I die in a car accident, I-ll die instantly and without too much pain," continued the passenger. "AIDS is a slow and horrible death and I don-t want to burden my family with having to take care of me when I get really sick."

The passenger then told of how one of his nephews had died of AIDS and how emotionally taxing it had been for his family to take care of him in the last days of his life.

"I don-t want my wife and children to ever have to go through seeing me suffer like that," he said, remembering what was obviously a painful memory.

Fear of stigma and discrimination has for a long time been identified as one of the main reasons why people living with HIV are often reluctant to disclose their status. But a sense of guilt at needing to be cared for, especially in times of serious illness, is definitely another important reason. This feeling is not only associated with AIDS-related illness, but also with other chronic or terminal ailments such as cancer or paralysis. Imagine then what difficulty a person who has poor family relations, or no relatives at all, faces in disclosing that he or she has advanced HIV or is now living with AIDS, with no realistic chance of obtaining treatment? Who does one turn to? And even those fortunate enough to have family and friends have seen many of these turn their backs on them owing to the great emotional and financial cost of care and support.

A recent Zimbabwean documentary, 'Pain In My Heart-, flighted on national television on World AIDS Day 2007 depicted the reality of care for one terminally ill AIDS patient. In the documentary, the audience is introduced to Angelina, a young mother who has two children. As she lies huddled under the cover of sheets and blankets, she jokes, "You might think I am strong but before you get far from here, I might be gone." She offers self-pitying laughter.

At that stage in her life, Angelina had lost all human dignity, needing to be washed and fed because she was too weak to do so on her own. Her young daughter, just seven, was tasked with completing household duties such as cooking and cleaning and fetching water - even missing school on days when her mother was especially sick.

"I lose sleep thinking about my children," Angelina adds. "Who will take care of them? They will become street kids. What can I do?"

Indeed, Angelina was powerless to do anything for them. By the end of the documentary, she had died from meningitis and left two young children with no one to care for them.

It cannot be easy to imagine what feelings of fear, guilt and uncertainty surge through a person-s mind at such a time. It is isn-t easy to fathom the difficulty with which a father, once a protector and breadwinner, accepts having to strip down in front of his son to be bathed, or taken to the toilet. It also isn-t easy to understand what emotions go through a child-s mind at such a time. Every human being demands dignity and often, grave illness robs individuals of this human right. This remains one of the most crippling effects of AIDS on humanity.

The man speaking to the bus driver was justified in every way to not want to cause his family such psychological trauma. But if families are indeed loving and compassionate towards members living with HIV and AIDS, they will take on the duties of care with the unconditional love that is necessary to counter the negative aspects of this epidemic - stigma, discrimination, rejection, pain and suffering. Feelings of apathy and inconvenience will obviously surface, but if love is the key element of care and support, these can be managed - a testament to the power of endurance and selflessness.

This, of course, is all easier said than done, yet all around us we have astounding stories of such compassion. But here is what I believe is the even greater evidence of compassion - that those who have not yet acquired the HI virus and possess the power to avoid infection consider the emotional, psychological and financial toil that care can take on potential carers in the eventuality of illness. If more people considered the fact that HIV is not just the infected individual-s problem, that it is not just a virus harboured in the body-s cells, but a social phenomenon that potentially pervades and reverses relationships of all natures, perhaps they might act more responsibly, more thoughtfully to protect all people and aspects of their lives that might become affected.

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