Wherever the HIV virus has won, stigma, shame, distrust, discrimination and apathy was on its side.
Submitted by: Christian Gremli
HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with the HIV virus. The first thing everyone must understand is that an individual who potentially thinks that he or she may have contracted the HIV virus, must first (by choice) muster up extreme courage to openly disclose one of their deepest and potentially darkest secrets by asking close peers or family members to accompany them to a clinic or health facility so tests can be done to confirm. At this initial juncture is where high levels of fear, doubt, and mistrust have already set in to that individuals mind and if he or she is to experience neglect at this point then you can expect that their levels of self-esteem will drop off the charts. Furthermore, once the result of that test comes back ‘positive’ the stigma of living with HIV has already begun in their mind.
Key points to remember:
Wherever the HIV virus has won, stigma, shame, distrust, discrimination and apathy was on its side. Every time HIV has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity, and the human perseverance to find new paths and solutions.
The fear surrounding the emerging HIV epidemic in the 1980s sadly still largely persists today. At that time, very little was known about how HIV was transmitted, which made people scared of those infected due to fear of the virus being contagious.
This fear, coupled with many other reasons, means that alot of people falsely believe:
• HIV and AIDS are always associated with death
• HIV is associated with behaviors that some people disapprove of (such as, drug use, sex with multiple partners, same sex and infidelity)
• HIV is only transmitted through sex, which is a taboo subject within itself
• HIV infection is the result of personal irresponsibility or moral fault (such as infidelity or lack of protection)
• Inaccurate information about how HIV is transmitted creates irrational behavior and misperceptions of personal risk.
“The epidemic of fear, inaccurate information, stigmatization and discrimination have undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those affected. This hinders, in no small way, efforts at stemming the epidemic. It complicates decisions about testing, disclosure of status, and the ability to negotiate prevention behaviors, including use of family planning services.”
There is also Self-stigma/internalized stigma and this is why it is so important for individuals who possess the virus to have strong supporting groups, families, friends & sexual partners.
Self-stigma, or internalized stigma, has an equally damaging effect on the mental wellbeing of an individual living with HIV. The fear of discrimination breaks down confidence and the capability to socially acclimatize and seek medical help or healthcare.
Self-stigma and fear of negative community reaction can hinder efforts to address the HIV epidemic by continuing the wall of silence and shame surrounding the virus. Negative self-judgement resulting in shame, worthlessness and blame represents an important but neglected aspect of living with HIV. Self-stigma affects a person’s ability to live positively, limits meaningful self-agency, quality of life, adherence to treatment and access to health services.
Community and household level stigma
Community-level stigma and discrimination towards people living with HIV can force people to leave their homes and change their daily activities.
In many contexts, both men and women often fear stigma and rejection from their families and sexual partners, not only because they stand to lose their social place of belonging, but also because they could lose their shelter and their ability to survive. The isolation that social rejection brings can lead to low self-esteem, depression, and even thoughts or acts of suicide.
Stigma and discrimination can also take particular forms within community groups. For example, in key affected populations such as lesbian, gay, bisexual, transgender and intersex (LGBTI) communities’ studies have shown that within some there is segregation between HIV-positive and HIV-negative people, where people associate predominately with those of the same status.
They [my family & friends] were embarrassed and didn’t want to talk to me.
My mother essentially said, ‘Good luck, you’re on your own.’
Many of my friends have chosen to remove me from their circle. I am now forced to live an outcast life.
In the workplace, people living with HIV may suffer stigma from their co-workers and employers, such as social isolation and ridicule, or experience discriminatory practices, such as termination or refusal of employment.
Evidence from the People Living with HIV Stigma Index suggests that, in many countries, HIV-related stigma and discrimination are as frequent or more frequently a cause of unemployment or a denial of work opportunity as ill health.
It is always in the back of my mind, if I get a job, should I tell my employer about my HIV status? I am afraid of how they will react to it. It may cost me my job, it may make me so uncomfortable that it changes my work relationship. Yet I want to be able to explain about why I am absent, and going to the doctors.
Ending HIV stigma and discrimination
• In the workplace and by extension the community, employers can reduce stigma via HIV and AIDS education, offering HIV testing, and contributing towards the cost of ARVs. Employees would be less likely to take days off work and will be more productive in their jobs. This will ensure people living with HIV are able to continue working.
• Enforcing the use of specific programs that emphasize the rights of people living with HIV is another well-documented way of eradicating stigma. As well as being made aware of their rights, people living with HIV can be empowered to take action if these rights are violated.
• A virtual community of practice, Equal Health for All, should be created to facilitate the sharing of communication, collaboration and experiences to implement a plan of action.
• The use of SMS or WATTS APP-based GROUP CHAT should be initiated to provide real-time monitoring of experiences of stigma and discrimination faced by people living with the virus, where professionals can provide assistance and knowledge to those individuals who are being victimized.
• Commitment to end HIV-related stigma and discrimination should be addressed by embarking on a national ‘Kick out HIV stigma’ campaign. This aims to leverage the power of young people to end HIV stigma and link them to stigma-free HIV testing, treatment and care.
Ultimately, adopting a human rights and knowledge-based approach to HIV and AIDS should be at the forefront. Remember, stigma and discrimination only deter the ever-evolving knowledge that is currently available. Removing these barriers is key to ending the HIV epidemic within our country.
While there are some local sites and contacts for support, it is my belief that this will be more effective if we get our LGBTQ community become more involved.