Here in South Africa HIV is a stigmatising illness. It is remarkable that even in developed countries people living with HIV still face discrimination, blame and rejection for having a viral infection.
If you read the link posted on Facebook today about Uganda's homophobic criminal laws and their refusal of access to HIV treatment if you are gay, it highlights what a huge amount of work we still have to do.
HIV is not a gay disease, in fact, in South Africa, it is a heterosexual disease ( but this does not mean that gay people don't get it). It does not require promiscuity to catch it, which is still a very common misconception which the media promotes. Serial monogamy puts you at high risk too, and by this I mean, moving from one sexual partner to another in succession, but never having two partners at the same time. Anybody who is having sex without a condom (be you gay or straight, child or adult) is putting themself at risk Full Stop.
But why is the stigma so bad here? Well, its a bit of a vicious cycle. Let's say that Jane is positive. She knows she is positive but is afraid to tell anyone for fear of rejection, violence, hostility, retrenchment or whatever reason. So she keeps it to herself. She might find herself travelling far distances to seek treatment at a clinic where she will not see anyone she knows. She begins to hide her treatment from her family, or lies to them about the medicine. Her fear of the perceived outcome of disclosing her status has forced her to lead a secret, humiliating life. She has no-one that she can talk to about this and so she also cannot get access to accurate information. She hears the myths and rumours about HIV in the community but does not have the courage to stand up and correct this information in case people assume that she is HIV positive. Little does she know that her brother is leading exactly the same kind of secretive life and living in fear that people will find out his status. So, they live side by side and lead parallel lives, never once realising that there could be a supporting hand, a comrade to take this journey with. Neither of them need live in such fear, it is the fear that forces the lies. And one lie creates more lies. This is a very hard way to live.
Now imagine thousands of people living this lie. The people in your office, people in your church, people inside your own home. The saddest thing about this is that this virus is so widespread, but so hidden that there are people losing out on the comfort and relief of being able to share this burden with someone.
Children may feel the stigma even worse. Take Sipho, a 9 year old boy who has to go to the clinic with his aunt every month. His aunt tells him he has TB and this is why he needs to get treatment and see the doctor every month. But he sits in the queue and sees the other kids, he hears them talk, he has realised that this clinic is actually an HIV clinic. But, he also realises that he is not supposed to know that he is HIV positive. So, he suspects that he is positive but can't talk about it. He has to keep up the pretense of having TB. But, he finds indirect ways to challenge his aunt. He asks her how his mum died, what caused it? He asks her if all the kids at the clinic have TB, or just him? But her answers are never satisfying or she avoids answering him. So, over time, his frustration builds up, as does his fear. Surely, whatever his illness is it must be so horrible that it can't be discussed. Maybe his aunt is too scared to tell him he is going to die. And his anger grows, and he becomes hostile and starts acting out with his aunt. He refuses to take his medicine, he runs away on his clinic visit days. The very person who is trying so hard to care for this child, to help him to stay healthy and grow, this very person is burdening him with the secrecy of HIV. Kids are more sensitive than adults will ever know, and they pick up on these things sooner than most adults are ready to talk about it. If this is a situation you need to deal with, be ready for your child's questions. Because they will come. And the rule of thumb is; if a child is asking you questions about his condition, he is probably ready to hear the answers.
Stigma comes from our politicians and the senseless confusing messages they send out. It comes from our dinner tables where we talk about HIV as if it is something that happens to 'them' and not 'us'. It comes from our desperate need to apportion blame - 'he's gay','she is promiscuous','he didnt wear a condom', because then it allows us to have control over it. But the truth is, these days you just can't be sure. You cannot assume that because your partner is white or middle class or is fat, that he/she will not have HIV.
And it is when we all realise that we are all at risk, that it could be any single one of us in that boat, it is then that the stigma will start to fall away. When you understand the vulnerability of all of us to this virus, the anger falls away, and so does the blame. And finally the stigma. It is when our brothers and mothers and colleagues and politicians start to stand up and speak out about their status, that this will become something normal in society. Right now, it is all so secret that people live in the false safety of ignorance. Confront the ignorance, and the discrimination will fall. OTherwise the stigma continues in its vicious cycle. The silence is feeding the stigma, the stigma feeding the silence.
Stigma means delayed access to Care: http://www.aidsmap.com/en/news/7E6CC8A8-CD31-42A1-B5FC-C11887B8B769.asp
Stigmatising treatment by health care workers: http://www.aidsmap.com/en/news/AF7D882F-2E46-4E94-9A05-2540781AA567.asp
HIV anti-stigma movement http://www.hivaidsstigma.org/
The psychology of HIV stigma http://psychology.ucdavis.edu/rainbow/HTML/aids.html
HIV Support in South Africa - bringing information, Dr Gail Ashford's thoughts and opinions to people affected by or living with HIV.