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It's the stigma that kills
Fungai Machirori
July 10, 2007

http://www.healthdev.org/viewmsg.aspx?msgid=C2EC0AF1-37D6-40D4-BB44-14A0FE187E86

A small but significant incident gave me the idea to write this article. Walking along the quiet streets of one of Harare's low-density suburbs, I noticed out on the lawn of one of the houses a dustbin overflowing with all sorts of used containers and bottles. And on top of this heap were two distinctive boxes of a common anti-retroviral (ARV).

Perhaps I only noticed them because as someone working in the field of HIV and AIDS, I know what some ARV drugs, and their containers, look like. But still, I felt it spoke volumes about the residents of that home, who are evidently living openly with HIV.

This unfortunately is not the case for many who have to go to great lengths to conceal their positive status, for fear of rejection or other hostile attitudes and behaviour. One person living with HIV (PLHIV) told me that she puts her pills in containers for other medication - like painkillers - in case anyone looks through her bag for any reason, or should the pills fall out of her handbag as she hurriedly rummages through its contents. She added that this was also a useful measure if she happened to be having a meal with people she had not disclosed her status to, as she has to take her medication with food.

I imagine many PLHIV completely avoid having to eat with other people in order to avert such awkward situations altogether. And because ARVs are drugs that have to be taken daily for the rest of one's life, I wonder what fear people are harbouring as they move around, imagining that they may bump into someone they know as they exit a pharmacy or clinic clutching new stocks of drugs, or that someone might discover a prescription or an empty bottle among their possessions.

It has been said before that it is not HIV that kills, but rather, the stigma that is attached to it. Stigma, or the fear of it, can kill a PLHIV's social life, with the individual choosing to avoid grappling with difficult issues such as when to tell the person they are going out with that they are HIV positive, or avoiding the general fear and lack of understanding that people display to those who are HIV positive. How painful it must be when people refuse to share clothes, toilets and utensils with another person from a fear or disgust of a virus that cannot even be contracted through sharing these. All human beings are social creatures who require acceptance and meaningful interaction with others, and without this, they experience untold loneliness, which is a sort of death in itself.

But stigma can kill even more directly. Someone I knew well died from fatal but avoidable drug interactions between her ARV medication and a course of antibiotics that she was taking. Why? Because she could not bring herself to tell her doctor when asked if she was on any other medication, that she was HIV positive and on anti-retroviral therapy (ART). Because she withheld this small but important piece information, she suffered organ failure and endured a painful unnecessary death.

If someone living with HIV does not feel comfortable enough to confide in a medical practitioner, who should ideally understand the virus better than most, then how much more difficult is it for him or her to disclose their positive status to the people with whom he or she interacts on a daily basis? Is society making it any easier for PLHIV to feel accepted, or are efforts towards this goal only in our words and not in our actions? Perhaps if we thought more often of how our stigma and discrimination harms lives, we would make more concerted efforts towards eradicating this negativity.

Those conversant on the epidemic have told us that HIV is a chronic and manageable disease like hypertension or diabetes, and that it cannot be contracted except through blood and sexual fluids, but somehow people are still not as accepting of the virus as they are of other illnesses. How many PLHIV feel comfortable putting their ARVs in the bathroom cabinets of their homes, like they would do with other medication for chronic conditions? I doubt there would be that many, and this is because of the fear that stigma can incite. And what this becomes is internal stigmatisation- or self-stigma whereby PLHIV begin to feel guilt or shame about their situation.

Ironically, if the society that we constantly advocate for daily really existed, I would not have had need to write this piece - because seeing an empty box of ARVs in someone's handbag, car, office, or even their garbage would not be a strange or newsworthy event.

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