My name is Cindy. I am HIV positive and I have been for 10 years. I come from a background of sales and marketing which I think has pretty much got me into the good place where I am now.
Well, my partner at the time was having stomach cramps and by the time he had his third stomach cramp I had taken him to a hospital where his bowel had perforated in four places. He “decided” to have an HIV test while he was in hospital, obviously advised by the medical staff, and it turned out that he was HIV positive. Later it came to my attention that he actually knew his HIV status two years prior to infecting me in 2004. I also had a test, right after he was diagnosed. When my partner went into hospital I had the misfortune of being informed by a member of the medical staff that he was HIV positive and I had a bit of time to reconcile myself to the fact that my status was probably going to come back HIV positive. The fact that I’m a little bit older probably has a lot to do with me accepting it a lot easier than maybe the younger crowd would accept it. It is what it is and I just have to deal with it.
Because there was so much stigma and discrimination around the subject, it took me six years to go public about my status, so it wasn’t just an overnight thing. I was probably fortunate enough to acquire other diseases so I could get away and lie about my health situation at the time.
What stopped me from telling anyone was the fear of rejection. I think is probably the greatest fear that you are going to be rejected. However, after six years I decided “Well, you know what, if people don’t want to be around me, I don’t need them.”
“It was an absolute weight off my shoulders after having disclosed my status. It was just amazing. The amount of acceptance was unbelievable.” – Cindy
I never got any pre-counselling or post-counselling and I realised I was totally misinformed. I had no information whatsoever. So I went about finding stuff out via Dr Google and I informed myself. It took me a long time to acquire and accumulate as much information as I could before I was comfortable enough to disclose my status. When I eventually decide to do something, well, I don’t do anything small. I arranged a full-on disclosure via a website that was sponsored for me and on 22 of January 2011 I put out my hand, stuck my finger on the button and went public.
I had disclosed to my mother prior to that, well not really disclosed to her … I was actually driving her to the airport one day and she said to me she had been at the hospital when I had my first stroke, and she said she’d heard the doctors discussing whether I was on antiretrovirals or not. So she asked me on the way to the airport: “So, are you HIV positive?” That was my disclosure to my mother: “Yes”.
I was not rejected … not at all. Well, those that want to reject me I don’t know about, or those that judge me I don’t know about. They don’t disclose that to me. It was an absolute weight off my shoulders after having disclosed my status. It was just amazing. The amount of acceptance was unbelievable.
I reckon people are scared, they are terrified; especially in the younger community they are terrified of rejection, of disappointing their parents and family. But I encourage everyone that I counsel to disclose their status to at least one person so that they can get that support from somebody because you cannot deal with it on your own. It is absolutely impossible should anything go wrong.
I always take the opportunity to get the message out there to people that you’re not the only one out there that’s HIV positive. There are lots of people, you may not be infected but somebody around you may be affected, and they all need your support. I’d just like to get the message out that the more people that actually disclose their status, the less stigma is going to be attached to it.
The People Living with HIV Stigma Index, or Stigma Index, documents how people have experienced HIV-related stigma and how they have been able to challenge and overcome stigma and discrimination relating to HIV.
People living with HIV receive training in quantitative data collection and implement the survey using a standard questionnaire which covers the following 10 areas:
- Experiences of stigma and discrimination and their causes
- Access to work and services
- Internal stigma
- Rights, laws and policies
- Effecting change
- HIV testing
- Disclosure and confidentiality
- Treatment
- Having children
- Problems and challenges for people living with HIV
The Stigma Index puts the principle of the greater involvement of people living with HIV and AIDS (GIPA) into practice, the research is driven by people living with HIV and their networks and provides them with evidence and opportunity to address challenges in their communities and catalyse change.
The findings are instrumental in increasing collective understandings of stigma and discrimination, and detecting changes and trends over time. The evidence has shaped future programmatic interventions by revealing areas of need and gaps in existing programming.
The Stigma Index is a powerful advocacy tool which will influence policy and support the collective goal of governments, NGOs and activists to reduce stigma and discrimination related to HIV. The Stigma Index has been rolled out in more than 40 countries, where it has been a catalyst for fostering change. Currently, SANAC, in partnership with WHRI and GIZ, is leading a national Stigma Index that is being carried out in South Africa. The preliminary results will be released on World AIDS Day, 1 December 2014.