The Cycle of Stigma and How it Affects HIV/AIDS and PLWHA
September 15, 2018
BY ISAAC D. JOSEPH
What is Stigma?
Stigma is a mark of disgrace associated with a particular circumstance, quality, or person. Stigma is like the venom of a poisonous snake, as its venom flows throughout our veins it paralyzes us inciting fear and panic within our minds and before a vaccine is given we have already made it up in our minds that we are going die. Sure there are some snakes bites come with a guaranteed certificate of death but not all do. HIV/AIDS is one of those bites where the venomous stigma runs so deep within the veins of society that before the information is given misconceptions, fear, and panic have already formed thus creating a conscious and unconscious prejudice, discrimination, and judgment about HIV/AIDS and people living with HIV/AIDS. People are still ignorant of the facts about HIV/AIDS and the people living with the virus and even after 30 years of research and amazing medicinal advances society continue to feed the cycle of stigma.
What is the cycle of HIV/AIDS stigma?
The cycle of HIV/AIDS stigma begins with the virus itself and the lack of education on HIV/AIDS and its transmission. Because of the lack of in education stigma opens the door for misconceptions, fear, and panic thus forming a conscious and unconscious prejudice, discrimination and judgment about HIV/AIDS and people living with HIV/AIDS.
The first formulation of the cycle of stigma begins with the many misconceptions about HIV/AIDS and the people living with the virus. One of the most common misconceptions about the HIV virus is the belief that it will always lead AIDS which is untrue. HIV is the infection that causes AIDS, but this doesn’t mean all HIV-positive individuals will actually develop AIDS. With current therapies, levels of HIV infection can be controlled and kept low, maintaining a healthy immune system for a long time and therefore preventing opportunistic infections and a diagnosis of AIDS. Other misconceptions about people living with the virus is that you can get HIV by being around people who are HIV-positive but HIV isn't spread through touch, tears, sweat, saliva, pee, or any other casual contact.
These many misconceptions then lead to the second formulation in the cycle which is prejudice. Prejudices against people living with HIV/AIDS are formed both consciously and unconsciously. When you think about the definition of prejudice it is a preconceived notion or opinion about a particular subject, persons, or people. One of the many prejudices that exist within the HIV community is that HIV/AIDS still only affect people within the LGBT and can only be obtained through homosexual sexual contact. This leads people to believe that as long as they do not engage in homosexual sexual contact they are free from obtaining the virus. This is not only false but highly inaccurate. Globally HIV affects more heterosexual people than it does people who identify homosexual. The misconception that HIV primarily affects homosexual men comes from the U.S. Statistics where men who identify as gay or bisexual are heavily affected by the virus and even though this is true homosexuals do not lead growing rates of HIV infection globally and they are certainly are not the only people that the virus can infect. In the U.S. heterosexuals accounts for 25% of all HIV infection with men accounting for 33% and women 19%.
From prejudice, the next step in the cycle is discrimination, the unjust or prejudicial treatment of different categories of people or things, especially on the grounds of race, age, or sex. More than 80% of people living with HIV/AIDS have experienced discrimination due to their status with most of that discrimination coming from family and friends. Just like prejudice, HIV/AIDS discrimination is done both consciously and unconsciously, but in most cases, HIV discrimination is done consciously especially when it comes to family and friends. For example, if you were to plan a cookout and did not invite the one friend or family member that is HIV positive because you didn’t want to make your other guest uncomfortable due to the misconception about how HIV is transmitted or after having dinner with your HIV positive friend you throw out the dishes in which they used because you were afraid that they will contaminate your other dishes and utensils. Conscious HIV discrimination usually stems from misinformation while unconscious HIV discrimination usually stems from pure ignorance. The most common place unconscious HIV discrimination is displayed right here in the United States of America. This is due to our country lack of comprehensive HIV/AIDS curriculum within our middle and high schools. As of 2016 there are only 22 states that teach a comprehensive and inclusive sex education curriculum within our middle and high schools and in most of those states fewer than half of middle and high schools teach all 16 critical topics that the Center for Disease Control and Prevention recommends, this includes HIV/AIDS education and prevention.
With education on HIV/AIDS being so little here in the U.S. this leads to the next formulation in the cycle of stigma which is silence. I like to think of silence as a loaded gun filled with bullets riddled with stigma, prejudice, and discrimination and each time that one of those bullets are fired there is someone who is afraid to disclose their status and there is someone who is afraid to find out their status. There is saying that silence is golden but in the case of HIV/AIDS not being silent is the key to prevention. The reason that the HIV rate continues to grow among men who identify as gay or bisexual is due to non-disclosure. The LGBT community has made it hard for gay men living with HIV to come out of the HIV-closet because it within the community once you have been infected with virus you are no longer worthy enough to be dated, loved, or have any type of sexual contact and with all of the other criteria that homosexual men put on their list of a perfect partner it is impossible for one who is living with HIV to feel as if they are even worthy of love and happiness themselves.
Silence is also the reason that there has been a rise in HIV infections among heterosexual people. When HIV is talked about within the heterosexual community the focus is usually on Magic Johnson, Charlie Sheen, or the AIDS epidemic in Africa. HIV disproportionally affects many in high-risk groups but there is a still a risk for heterosexual men and women who choose to have unprotected sex, but due to lack of community awareness and support heterosexuals living with and without HIV tend to go untested. For those that do find out their status, they are likely to keep their diagnosis to themselves in hopes that no one will find out, but I believe the truth of the matter that they fear being labeled a stereotype that most often seen when campaigning or raising awareness about HIV/AIDS.
The topic of HIV is heavily ignored within the heterosexual community. Many people in the community go on with their status being unknown and they are not referred to get HIV testing because they are not considered high-risk. Even though it is up to every sexually active individual gay or straight to know their HIV status the heterosexual community is usually pushed to side but are equally in danger of infection. This is because HIV has always been thought of as something that happens to “those type of people” within the heterosexual community and never as something that can happen to them as well.
The last formulation in the cycle of stigma is fear. Fear is the main component that drives, feeds, and breathes life into stigma. Fear erodes confidence that there is no life after being diagnosed with HIV/AIDS. We have allowed fear to erect barriers around people living with and without HIV. Fear is what creates stigma and it is fear that keeps people from not only disclosing their status but also from getting tested thus further spreading the virus. It is only when we can eliminate the fear that we can eradicate HIV/AIDS.
But shouldn’t people fear HIV/AIDS?
The truth is yes, people should be afraid of HIV/AIDS in order to guard themselves against it because fear equals caution, caution equal precaution, and precaution equal prevention, you should fear the virus, but you shouldn’t be afraid of people who have the virus. This issue with stigma is that most people can cope with being diagnosed HIV positive, but it the labels that come along with being HIV positive that drives people to substance abuse, alcohol abuse, and suicide. Today there are life-saving medicines that keeping people alive for years allowing them to live a full, long, and healthy lives, but when you are diagnosed HIV positive you are given a label and it is because of this label the most people do not seek care or even care to get tested. People need to understand HIV and know that it is treatable, but people also need to understand how labeling and HIV positive and affect not only them personally but also their treatment as well.
What types of prejudice or discrimination do people living with the virus face?
In many countries around the world, people living with HIV are seen as pariahs. They are beaten, outcast, exiled, and suspended from not only society but also their families too. Finding out that you are HIV positive in countries such as India or Africa can only mean two things you have engaged in homosexual activities or you were born with the disease. Most children born with HIV in these countries are left abandoned by their mothers who are the very reason that they are HIV positive.
The conscious and unconscious prejudice and discrimination that most people living with HIV experience are not only done by words but by the actions of those living free from the virus. It is how people living with HIV/AIDS are treated by those living free of the virus. For example, a person being afraid to shake someone’s hand because you are afraid of becoming infected with the virus; or not wanting to sit next to someone because they are HIV positive.
The most common unconscious prejudice that people living with HIV/AIDS experience come in the form of a label. People living with HIV/AIDS or no longer seen as a person but also as the virus itself. People no longer ask about your day or work, but instead, they ask about your HIV health status and how sure you are that you are not contagious. One major misconception that comes along with this prejudice is that you can tell when someone has HIV/AIDS just by looking at them and that having an HIV diagnosis is an immediate death sentence, but this is far from the truth most people who are HIV positive or some of the healthiest people and live for a lifetime, so even get married and had had children who are born HIV negative thanks to modern medicine.
How does stigma affect those living with the virus?
Within the cycle of HIV/AIDS stigma, there is another cycle as well. It is the part of the cycle that affects those like living with HIV/AIDS. The effects of stigma, prejudice, and discrimination are damaging to both PLWHA and society. As stated previously HIV/AIDS stigma extends from the lack of education on HIV/AIDS creating both misconceptions about the virus and pure ignorance. The cycle ultimately ends with the virus and people alike being feared due to prejudice and discrimination of HIV/AIDS. This is the portion of the cycle that does the most damage both PLWHA and society.
Discrimination, as mentioned, is the unjust or prejudicial treatment of different categories of people or things, especially on the grounds of race, age, or sex and as mentioned more than 80% of people living with HIV/AIDS have experienced discrimination due to their status. The discrimination of PLWHA often has adverse effects such a delayed treatment and fear of disclosing their HIV status, what is the most damaging is the continuance of spreading the virus. Discrimination creates fear and the fear of disclosure which is the most damaging to both PLWHA and society.
As mention, the most common form of HIV/AIDS prejudice is being labeled and just like the next no one like to be labeled or judged. Often times the labeling of people living with HIV/AIDS can lead to a more damaging problem such as depression, substance abuse, and social anxiety. Clinical depression is a major concern when it comes to people living with HIV. According to the American Psychiatric Association, many health care professionals believe that an HIV positive diagnosis will naturally result in depression as well as trigger other mental and mood disorders such as such as anxiety, insomnia, mania, cognitive impairment, and neurasthenia fatigue syndrome. African-American men and women, and gay and bisexual men of all races have a higher risk for depression which may lead to high-risk behaviors such as drug and alcohol abuse, and even suicide.
How does stigma affect those living without the virus?
Stigma also keeps those living free of the virus from talking about it. Silence is the number one reason HIV infection are gradually rising and for people living without HIV/AIDS your chance of catching the virus is even higher now that HIV/AIDS has is affecting population even though there has been an 18% decline in the annual HIV infection rates there are more than 1.1 million people living with HIV/AIDS in the U.S. alone, 1 in 7 people are infected with the virus and don’t even know it. People living without HIV/AIDS can only relate to the virus if they feel as if the virus is something that can affect them as well, and it can. HIV/AIDS has never been a virus or disease that only targeted a specific group of people, it just so happens that the narrative that was played out started with a particular group of people. HIV/AIDS can affect us all.
What can we do to end the cycle of stigma against HIV/AIDS?
Ending the stigma against HIV/AIDS and the people alike is not an easy feat but the walls that we have allowed to build against HIV/AIDS can simply be torn down with more direct communication targeting everyone and not just a particular group of people. Society must also start to normalize that virus/disease just as it does any other chronic illness. By doing so society would be a taking a step toward compassion and understanding of the virus and people living with because HIV is a livable and treatable illness. Society must also realize that living with HIV/AIDS or that being diagnosed with it is no cake walk; for most being diagnosed with HIV/AIDS can be quite traumatizing and can have lasting effects both physically and mentally be it is a chronic illness.
To people living with HIV/AIDS, we must become transparent about not only the virus but ourselves as well. We go through so many emotional cycles that break down our mental state and we become fragile and it’s OK because we are human and being diagnosed with a chronic illness is can be traumatizing, but we cannot be afraid to come out of the HIV closet. We must be honest with our partners and spouses about our HIV status. We live in the age of SCIENCE not STIGMA where if a person living with HIV is UNDETECTABLE they are UNTRANSMITTABLE, U=U.
If we continue to feed the cycle of stigma we will continue to promote prejudice and discrimination against those all around the world living with HIV/AIDS and suffering from HIV stigma within their own countries. People living with HIV are nothing to fear, we want the same thing that everybody else wants and that is to be treated with respect.