blog 160414 shame
Internalised stigma is the negative view that we can take of ourselves, often based on our own perception of the way we believe the rest of the world sees us. As we grow up we come to learn that certain characteristics, like our thoughts, our attractions, political beliefs, religion, etc are often unacceptable to some people, and judgments can be made about us based on these characteristics. For people living with HIV we can find the virus itself attracts judgement from other people. Internalised stigma happens when we anticipate and believe this judgement to exist – real or imagined.

For many people living with HIV we often carry these feelings of shame, blame and guilt about HIV – all symptoms of internalised stigma. The fear of discrimination is a very real one and can lead us to believe that we are in some ways a lesser person or marked out in some way. We can almost feel that HIV positive is somehow emblazoned across our foreheads and that everyone knows just by looking at us. Yet in reality the rest of the world has no idea of the secret we are trying to hide. For most people, there is no physical characteristic, no mark and no sign.

Internalised stigma means other people can have an invisible power over us. We can withdraw socially, watch our own words and behaviours in anticipation and fear of what other people might say or might do if they knew about our HIV. We have heard people say ignorant things about people living with HIV, seen reaction and comment in the news, and may have said it ourselves to hide our own HIV status. This rejection is what we fear, it is crippling and isolating. Our internalised stigma can prevent us from seeking out meaningful relationships, taking care of ourselves, and ultimately keeping us sicker than we need to be.

However, it is important to know you are not alone. There are people just like you who have risen above stigma, internalised or real. We have learnt to stand and rail against this discrimination. There are laws in place to protect us and services to help you use them. Over time and with experience we have developed the resilience to stand proud knowing that we are no less important because we are HIV positive. Those who attempt to reject us because of HIV can be a reflection of their own view of themselves or their own ignorance about HIV.

Seek out those who are like us and those who accept us for who we are. On those days where it does get to you, reach out to the friend who is there for you because they may need you tomorrow. Social support is key to learning to deal with internalised stigma and feeling you can take control of HIV.

If you live with HIV and feel isolated or need support, you can call Positive Life on (02) 8357 8386 or 1800 245 677 (freecall). We’re here to talk, to support and to listen.


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    Harley Cox 22 June 2016 at 12:51 pm

    So what’s the stance now? Is stigma, by the HIV negative and status unknown communities real, as David suggests or just our imaginations, as Lance Feeney claims?

    Actually if Lance is right, then his work is done, and Positive Life could better serve the positive community by employing a clinical psychologist with the saved wages bill.

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    Positive Life NSW 29 June 2016 at 2:03 am

    Hi Harley,

    Thanks for this response. David’s article does say that HIV stigma is both real and also internalised. Lance’s articles about stigma say the same thing however, he never suggested stigma was just in our imagination. While there have been many advances to protect the rights of people living with HIV, Positive Life see the effects of stigma and discrimination in our community on a daily basis.

    Staffed by people with HIV ourselves, we know how easy it is to assume prejudice or discrimination is about our sero-status. Lance asked ‘Why?’ Sometimes prejudice is about things other than HIV. Our work draws on the advice and expertise of clinical psychologists and mental health research when we ask “why are HIV-positive gay men so quick to blame HIV and stigma”?

    Lance asked the body positive to consider the bigger picture rather than blaming HIV stigma. Stigma and prejudice today might not be about HIV like it was in the 80’s and 90’s. Today, it could just as easily be about appearance or age or any other forms of prejudice rife in our society today that affect anyone – gay or straight, HIV or not.

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