Spoiled Identity: Gay Men, HIV and Stigma
Photography by Chris Knight.
When John failed to arrive for his psychotherapy session, I became concerned. He had been living with HIV for years and had always been responsible with appointments, medications, and self care. A call to his roommate revealed he hadn't arrived home the night before, and after several worrisome days, he was found in a hospital in another county. He had become disoriented while driving and had run his car off the road.
Medical tests were troubling: John was diagnosed with HIV encephalopathy complicated by hepatitis. His cognitive processes were in decline and, alone and unable to care for himself, John was placed in a nursing home to begin what would sadly be his final months. After a lifetime of effectively combating discrimination, John's last days were filled with gay and HIV-related stigma. At 42, he clearly stood out from the other geriatric residents. He ate by himself and interacted with no one. His own frailty prevented him from reaching out. While other residents were unaware of his diagnosis, staff certainly knew but were unaccustomed to HIV/AIDS. Some refused to touch John or provide any care at all. Others confronted him directly, stating that, as a gay man, he got what he deserved, while others went out of their way to whisper their hateful words. Complaints to the facility administrators resulted in reprimands and a brief training event, but nothing significantly changed. In his final months, John was driven back into the closet under the crushing weight of stigma.
This is not a scenario from the early years of the AIDS epidemic. Unfortunately, this occurred recently and is just one representation of a broad range of stigmatizing attitudes and behaviors that impact both the growth and trajectory of the HIV epidemic. Despite campaigns to address it, there continues to be no safe refuge from stigma and in fact, in some ways the situation is deteriorating. Societal attitudes actually appear to be backsliding, a growing divide is separating negative and positive gay men, and the critical chatter of self-talk and self-judgment keeps the pain of stigma alive among those living with the virus.
he concept of stigma became prominent with research in the 1960s by Irving Goffman who studied prisoners, mental health patients, and homosexuals. He found that stigma sprang from a perceived violation of shared attitudes, beliefs, and values, and that societal power was very much entwined with these beliefs and resulting discrimination. When certain attributes are deemed to be negative (such as HIV status, homosexuality, or substance abuse), the individuals who have those characteristics become deeply discredited and, in Goffman's words, are reduced "from a whole and usual person to a tainted, discounted one." This difference, or deviance, results in what he called a "spoiled identity" and which many of my gay, HIV-positive clients describe, with great personal pain, as the distinct feeling of being "damaged goods."
Stigma is often conceptualized as having two expressions: enacted versus felt stigma. When enacted by others, stigma results in very real discrimination which can be described as unfair treatment based simply on someone belonging to a particular group or having a certain attribute such as HIV. Enacted stigma can take the form of silence or rejection, as well as verbal or even physical abuse.
Felt or perceived stigma, on the other hand, is the real or imagined fear of societal attitudes. It is more insidious because it is, literally, an inside job and is rooted in shame, the deep belief that one is significantly and irreparably flawed. It often results in self-imposed discrimination, a defensive choice to act as if stigma has already been expressed. Many HIV-positive men, for example, won't date in order to avoid the painful consequences of stigma or defer disclosure because of potential rejection.
As gay men, we are bombarded from an early age with negative messages that there is something wrong with us. This disconnects our internal feelings from our external presentation, and leads inevitably to the challenge of discovering our "authentic self." (This process and its healing are wonderfully described in Alan Downs' The Velvet Rage). Such a deep well of shame creates a fertile breeding ground for felt stigma, where the very real danger of discrimination fuses with one's internal negative beliefs, resulting in a destructive, self-sustaining pattern.
The experience of stigma for gay men is often compounded because they have multiple characteristics that are devalued by society: they may be gay, substance abusers, HIV-positive, and disabled. Some are sex workers, some have a diagnosed mental illness such as depression, and others may be homeless. There are hierarchies among these stigmatized attributes. For example, many of my clients who have lived with HIV for many years are judgmental of those who are newly infected ("How could they be so stupid? When I was infected we didn't know any better."). Others remember when it was common to distinguish between the "innocent victims of AIDS" (acquired through transfusion) versus the not-so-innocent ones (those who must have been recklessly promiscuous).
Impact of Stigma
Photography by Chris Knight.
Stigma extracts a heavy price not just on those unlucky enough to experience it, but on the shape of the epidemic itself. It impacts access to prevention, testing, and care. One's willingness (or not) to be tested for HIV is driven by stigma, which accounts for at least a portion of the estimated 20% of people living with the virus who don't know their status. Stigma-driven fears about being seen entering a testing site keep many away and even with their trusted physicians and health care providers, many people refuse to discuss high-risk sexual behavior that might have resulted in a health concern.
For others, there is the belief that HIV is someone else's problem, which can lead to dangerously high levels of the virus in a given community. This attitude occurs among both individuals and professionals. Many groups employ a denial mechanism, fueled by stigma, that blinds them to their own risks. A recent study found that black MSM (men who have sex with men) are less likely to use a condom with a man who appears very masculine because of a false assumption that such a man couldn't be HIV-positive. Many men continue to engage in high-risk sex because their partner looks healthy, while believing that those who don't appear healthy must have HIV.
These attitudes exist among professionals as well. When I recently conducted a training for 50 mental health workers in a major city with one of the nation's highest incidences of HIV, I asked how many had clients affected by HIV and only a few hands were raised. That itself is a form of stigma ("my clients or their family members couldn't have HIV ...") since every one of them no doubt had clients directly affected by HIV. Their denial, discomfort, or prejudice was contributing to the shame and stigma of someone at risk for, or living with, HIV, as well as the quality of their professional care.
For those living with physical signs of HIV, such as lipoatrophy (loss of fat in the face, limbs, and buttocks), the impact of stigma can be unavoidable. Others with no outward signs find it easier to "pass," but often become highly attuned to any sign of judgment from others, a process which soon becomes internalized and develops into "felt stigma."
Whether one can "pass" or not, stigma impacts the health of those living with the virus in a number of ways. The perpetual experience of external and internal judgment and shame contributes to chronic stress, which has direct physical consequences. Stigma impacts medication adherence, as well. Many people won't take their meds in situations with a high potential for stigma, such as a dinner out with colleagues, visiting relatives who make uncomfortable inquiries, or a date with someone who doesn't yet know one's serostatus.
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