in many ways. Discrimination and other human rights violations may occur in healthcare settings, barring people from accessing health services or enjoying quality health care. Some people living with HIV and other key affected populations are shunned by family, peers and the wider community, while others face poor treatment in educational and work settings, erosion of their rights, and psychological damage. These all limit access to HIV testing, treatment and other HIV services.
Stigmatization is a dynamic social process that arises from the perception that an individual has undesirable attributes, thus, reducing him in the eye of the society. Stigmatization sets an individual or group apart from the majority of the population with the result that the individual or group is treated with suspicion or hostility and that others regard them as tainted and discounted. People with discreditable attributes may seek to hide their attributes and avoid stigma or undertake information management by controlling what they tell others.
Self-stigma and fear of a negative community reaction hinders efforts to address the HIV epidemic by continuing this great wall of silence and shame surrounding the virus. Negative self-judgement resulting in shame, worthlessness, hopelessness and blame represent an important but neglected aspect of living with HIV. HIV stigma is unnecessary judgment and discrimination placed on those who want nothing more than a life without the virus.
Self-stigma affects a person’s ability to live positively and limits meaningful self-agency, quality of life, adherence to treatment and access to health services. HIV stigma first originated from a fear of death. It was part of the anxiety of an illness that had such a devastating impact during the early years of the epidemic. Social stigma today toward those of us living with HIV is actually much greater than it was when I was diagnosed in 1986. Back then, we were so traumatized by learning about our diagnosis, mostly because we were afraid of dying. Presumably so, it was a death sentence at the time. There were some people that even kicked out their positive roommates or disowned their family members, not because of stigma, per se, but because they were deathly afraid of HIV and of contagion.
Now in present day 2019, and with the tremendous advances in technology, we now know that HIV can be a manageable condition, although the social stigma is still present, even though science has made HIV controllable, the cloud of stigma is still prevalent. It’s like a huge scar across the entire society, always reminding us of the looming shadow of AIDS and the shame of those who are infected.
Stigma is mostly expressed in language. Since the onset of this pandemic, the powerful metaphors associating HIV, are with death, guilt, punishment, crime, horror and ‘otherness’ and have compounded and legitimated stigmatization. This kind of language derives from, and contributes to, another aspect underpinning blame and distancing; people’s fear of a life-threatening illness. Some fear-based stigma is attributable to people’s fear of the outcomes of HIV infection. In particular, the high fatality rates (especially in areas where treatment is not widely accessible), fear related to transmission, or fear stemming from witnessing the visible debilitation of advanced AIDS. Stigma is so very deeply rooted, operating within the values of everyday life.
Although images associated with AIDS may vary, sadly, they are all patterned so as to ensure that AIDS-related stigma plays into, and reinforces, social inequalities. While the quality of life has improved enormously for people with HIV in the past 39 years, many of the same social and psychological barriers remain.
HIV is unlike any other disease, at least not in the way that the public perceives it. What separates it and makes it different from other illnesses, like cancer or heart disease, is that like a communicable disease, those infected are often seen as vectors for transmission. Blame is frequently assigned, and not just to the infected individual but to an entire population, whether they be injecting drug users, gay men, or people of color.
People with HIV faced stigma on a number of fronts because HIV touches on so many social taboos including sexuality, death, sexual practices (e.g. practicing anal sex), gender roles, morality (e.g. whether or not they were a 'good' or 'bad' person), race and mental health. Many thoughts that HIV is especially stigmatised because it is mainly caught through sex and often thought to affect 'promiscuous' people. Some people remarked that the only way to overcome prejudice and stigma was to be more open about the disease and try to listen to people who have HIV.
Even before the AIDS epidemic began in the early 80s, many of these groups had already been stigmatized, labeled by many, as being either promiscuous or irresponsible. By the time the first wave of infections hit, the rapid spread of the disease through these communities only perpetuated negative stereotypes. As a result of these stereotypes, the people most at risk of HIV were often sent into hiding, either for fear of discrimination, abandonment, or abuse.
Discomfort with one’s sexuality also plays a major role in the stigmatization of HIV. Even in otherwise known progressive cultures, sexuality can often incite intense feelings of embarrassment or shame, particularly when related to homosexuality, sexually active women, or sex among youth. At the same time, so-called "secondary disclosures" (the "How did you get it?") further prevent many from stepping forward when faced with such fears as having to admit an affair, reveal a drug problem, or come out about one's sexuality. As sad as it sounds, some HIV criminal laws in several states only serve to reinforce these fears, casting persons with HIV as "blameworthy" while suggesting that those without are "victims." All of these issues only contribute to feelings of stigmatization, both real and perceived, and may explain why 20% of the 1.2 million Americans living with HIV remain wholly untested. These inequalities particularly include those linked to gender, race and ethnicity, and sexuality.
Men and women often do not deal with this in the same way when infected or believed to be infected by HIV. Adapting and coping, can be extremely difficult for persons in already stigmatized communities to identify as HIV-positive, many PLWH do accept their HIV status and successfully form an identity of being proactive and choosing to live. Adequate treatment for depression and anxiety, along with acceptance of one’s diagnosis, provide a protective buffer against stigma and promote acceptance of lifelong HIV treatment.
The big question remains, while HIV still exists, will we ever be able to completely end the stigma that surrounds it? There’s no easy answer, but I believe the new U equals U movement is one source of great hope. U equals U, or U=U, stands for “undetectable equals un-transmittable”. It represents the major consensus of the medical community, that when HIV is undetectable in the body, it cannot be transmitted. That means a person living with HIV who has an undetectable viral load cannot transmit the virus to anyone else.
Today, the U=U consensus statement has been signed by 766 organizations in 95 different countries. And for World AIDS Day this year, Canada became the first country to sign on to the statement. It is my sincere hope that more countries will soon follow. The HIV stigma still exists today in every corner of the world, but there is hope. There is hope in all the work that has been done to raise awareness and breakdown this stigma. There is hope in the U=U movement and there is hope in all of the people who continue to live their lives with HIV because we won’t let the virus, or the stigma that surrounds it, hold us back. I am a firm in the belief that finding one’s spirituality and the meaning of our life dramatically benefits those afflicted with the virus, in addition to those who are in-directly, or directly in contact with someone that is positive.
Learning how to overcome HIV stigma is not never an easy thing. It requires a great degree of self-reflection, as well as an honest assessment of your own personal biases and beliefs. One of the aims is to understand which of our fears are perceived (based on attitude or perception) and which are enacted (based on actual experience). By separating these two, you'll be better equipped to lay out a strategy to not only overcome your fears but to better protect yourself against real acts of discrimination and abuse.
Overcoming stigma is not so much a decision as a process, one that takes time and patience. Most importantly, it's about not being alone. Sharing your fears with others can often put things into a much better perspective, providing you a sounding board, rather than isolating yourself with your deepest, darkest looming thoughts. While many people with HIV are now enjoying strong, healthy, full lives; urgency and collaboration are needed to ensure dignity,