On World AIDS Day, it is gratifying to see increased attention paid to stigma, which has a devastating impact on prevention, testing and treatment. Creative and thoughtful campaigns utilizing social media and other venues are beginning to make a difference. Some anti-stigma programs are even being mandated as part of international aid. While many programs don't yet effectively address institutional, governmental and religious power structures that perpetuate stigma, they are impacting education and skills to build empathy, each of which is extremely important.
The most commonly recognized form of stigma is what Goffman, one of the earliest researchers to study the issue, called "enacted stigma." This comes from outside an individual and takes many forms including shunning, silence, ignoring, outright discrimination, and all kinds of abuse: emotional, verbal and physical. There is another form of stigma, however, that is largely unrecognized and which continues to flourish, effectively preventing us from getting closer to zero. This stigma is what Goffman called "felt stigma." Simply put, this is stigma that someone internalizes about themselves: It truly is an inside job.
Such felt or internalized stigma can be especially destructive because it begins to distort how someone views him or herself. It results from experiencing or witnessing actual acts of discrimination, but its real destructive power is that it perpetuates those hurts and fears by hijacking the imagination of the person. Felt stigma causes someone to anticipate negative social reaction and can be devastating to their identity and behavior. Goffman described this process as someone believing they had become "spoiled fruit," which painfully echoes the words of so many men and women I know who are living with HIV/AIDS: "I feel like damaged goods."
Everyone affected by HIV has likely experienced stigma and discrimination, so fears or anxiety about disclosing one's status aren't just a product of the imagination. To be sure, a keen awareness of our surroundings and situations protects us from harm. The danger lies when a person starts to internalize these negative feelings about her or himself. This process can begin very subtly, but negative beliefs often expand unchallenged because they are assumed to be true. Goffman wrote, "The stigmatized individual may be able to hide the discrediting attribute from others but cannot do so from him or herself." As a result, people begin to feel unworthy and limit their exposure to potential stigma, avoiding any behavior that might result in humiliation or discrimination such as getting tested or revealing HIV status.
Feeling like damaged goods results in one's world beginning to shrink as social confidence plummets. Some people create false selves which they present to the world, or withdraw socially, reducing their world and their system of support. Worse, they may succumb to anxiety or depression, numb their feelings with drugs, or move toward suicide.
This doesn't have to be the case. It is essential for anyone thinking that they are "damaged goods" to break free of this thinking and connect with others who are safe and trusted. Corrective feedback from the outside is essential to challenge such erroneous and destructive beliefs and to break this cycle. Sometimes the only way to begin to see ourselves as worthy and valuable is to experience such support from others.
As more people disclose their HIV status it will have the powerful effect of reducing stigma and discrimination. I understand that for many people around the world, however, such public disclosure has the potential for significant and even violent reactions. Even where such dangers exist I hope that people can look deep inside and clearly separate other people's discomfort, bias and hate from what they believe to be true about themselves.
We are most definitely NOT damaged goods. Many of the men and women living with this virus have overcome unbelievable odds and transformed their experience into gifts that benefit and heal us all. Somehow they were able to avoid letting stigma from the outside poison their self-concept. More important, they were able to affirm and build on a core belief that they were valued, worthy, and lovable. Not one of them was able to do this alone -- the strength of connection to others is vital for this to occur.
Fighting stigma in the world is essential to get to zero, but it's not the whole story. Each of us living with HIV needs to identify and throw away our inner stigma, those dark beliefs about ourselves that bring us shame and affect our behavior, and which do not belong to us. Without doing so, we will only continue to fuel the forward momentum of this epidemic.
[Editor's note 11/21: This blog entry originally appeared on TheBody.com for World AIDS Day 2013.]
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