HIV, Stigma, Fear, and a personal experience.

In my last post I helped you all catch up with some of the more recent, and quite painful events. I focused in on a tragic example from this past week, and I mentioned a little about teaching methods, stigma regarding HIV, and fear.

It’s important to note that my last post was focused in on the event and immediate feelings caused by them. It’s not the first dark, uncomfortable post I’ve written, and unfortunately I don’t believe it will be the last. I like to write my posts from personal experience, and I like to focus on the meanings as they affect my reality here in my village. In that line of thinking, I wanted to write today about the above mentioned topics. HIV stigma, teaching methods, and fear. This is a personal post, and I think it’s only fair to warn you that I’m going to share some personal details about my life here. It’s not something I’ve done before, and honestly they aren’t necessarily topics I’ve shared with intimate friends/family either, they are however quite valid and relevant.

I was deeply disturbed and frustrated, even angry with the young mother who refused her status and declined the PMTCT (Prevention of Mother to Child Transmission) Anti-Retroviral drugs that could have helped protect her unborn child. Her fear, and primarily the concern of what it meant to her personal life, the realities she was forced to face at home (how the infection of her partner and subsequently her occurred and what it meant about her marriage and partnership) and her fear of life after knowing her status are all valid. There is still a very real fear that HIV is the end of the world, that it is a death sentence. Unfortunately because of stigma, it can be an end to a person’s social and work life as they know it. It’s illegal but it still happens, and although rights of patients with positive status are being promoted they’re still often violated. Still, the greater morality in my mind is to protect your child, especially as a mother. More so if there is no other cost to you than taking a few pills. You don’t even need to accept your status, just take it as risk mitigation. But that’s my perspective. Her perspective has to be that if she accepts the pills, she accepts that she might be at risk, and as a result that she might be positive, which in hear thinking is the same as being positive. I can empathize. Still, the anger passed, and I realized that although I was saddened and disappointed in her choices, and deeply upset at the ramifications for her newborn daughter, I was also externalizing some of my unprocessed frustration and pain from a previous relationship.

A few months ago, I became involved with a young (24) Zambian woman. She was in the province as a fresh graduate from college, working for a construction company. We started a friendship, continued talking, and became romantically involved. I took full precautions, but made a single important mistake. I took her word about having gone for VCT (Voluntary Counseling and Testing) and put off the requirement that we go together and receive our results together. She had told me that she had gone for VCT, and that she hadn’t had a sexual partner since 4 months before that visit. Her facts lined up, and over several months and several discussions remained consistent. That gave me confidence as we talked about HIV, Stigma, and transmission, we talked about our relationship, we talked about honesty and trust, and we became involved on another level. There was no point that safer practices were not used, and it should be noted that care was taken at every turn. However, I go to get tested every three months as a personal precaution, and I use the tests publically in my community to demonstrate the process of voluntary counseling and testing. I invited her to accompany me, and to participate with me, to help demonstrate that it wasn’t just foreigners or whites who went to get tested, but that local Zambians did as well. She immediately disagreed. More importantly she violently protested (verbally). I didn’t understand. We’d discussed these things, she’d already been tested…, there was no way she could have been infected. She started proclaiming that she had led a good life, and that she hadn’t done anything risky. I was shocked and confused. What? What was going on? She refused to come with me to get tested, and as a result a few days later I invited her for lunch at a small café next to a testing center, and after we’d met up, I walked her over to the center. She protested, it took nearly an hour of arguing in the street for her to walk into the center, and as we sat down for couples counseling she watched me go through the process, and get my test done (I was and am still negative). When the counselor turned to her, she said that it was her right to refuse testing and that she would come back – I accepted, saying that I knew it was a hard decision, we’d come back later that week. I accepted her fear, and talked to her about it. It was then that I learned she’d never been to get tested before, and didn’t know her status.

I was furious. I felt betrayed, and I was angry that she would put my life, health, and future at risk. Not to mention that with that trust broken, I could no longer believe she was faithful in our relationship. She’d completely shattered my trust, and the relationship. Her earlier protests now made sense, and I could see where I’d been lied to and led astray. I was dumbfounded. I had been completely honest with her, and she’d sworn and promised to be the same with me, we’d talked about it several times as our relationship continued, and she’d continued on with the lie. Her arguments after returned to that of having lived a good life, and not having had any risky behavior. She said she couldn’t bring herself to accept the idea of being positive, and that she knew she was negative. We argued back and forth over two weeks about her behavior and about getting tested. In the end she degenerated to racist comments, as well as accusing me of being unfaithful, and putting her at risk (she was playing a blame game in order to convince herself that she couldn’t be at risk and didn’t need to know her status).

Needless to say, it ended the relationship, and I learned a valuable and insightful lesson about the power and effects of stigma and fear of HIV first hand. I had offered support, counseling, and friendship to her regardless of her results, had taken her to see me get tested, had continued talking with her after she violated my trust…but none of it could overcome her overwhelming fear of being positive. – I was party to her arguing with herself on multiple occasions just after the day that I’d brought her with me for VCT that she couldn’t be at risk as she’d never had unprotected sex, nor had she engaged in “risky” sexual acts. Even convinced of these things, she couldn’t bring herself to face the possibility that she might be positive.

I would like to note that I immediately contacted my medical team, at our first argument, and advised them. As a result, I started on a three month testing program to make sure that I hadn’t been exposed. The chances were infinitesimal, to say the least considering the level of precaution taken, but it is always better to be sure than sorry. I was tested every 4 weeks for three months – all negative. I continue to be tested monthly out of choice, and use the public tests for the same earlier reasons, as a demonstration in the community of the process and the importance of testing.

Those feelings, the hurt, and the betrayal from that incident however has not fully healed. It was those feelings and pains that brought so much anger and frustration to the surface last week. It was also that experience which gave me a better insight into HIV in Zambia, and why so few Zambians go for VCT – a free and confidential service. Only about 15% of the population has gone for testing.

It strengthened my belief in the need for more role plays, and public examples of testing by Zambian nationals. Although I continue to use it as a teaching method, which has its benefits as I have a certain credibility and status due to my heritage, I can unfortunately be written off as a foreigner, and as a white, outside of their culture, and immune to stigma – as I’ve heard said during my presentations, “you’re different, you’re not like us. HIV isn’t the same for you.” Yes, it is. It holds the same fear and terror. But it’s always better to know your opponent. If you remain ignorant, you can be ill and infect others, you can miss signs and put your life at risk, and you never have a clear and comfortable conscience regarding your status and health.




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