HIV and Self-Stigmatization
September 23, 2018
BY ISAAC D. JOSEPH
“You are a dirty, disgusting, diseased ridden, homosexual that is being punished by God for living a sinful life that deserves to die in the most horrible way that a human can die” – YouTube Comment
In my article “Living with HIV in the 21st Century” when talking about stigma I wrote that images of this mass epidemic only depicted by death is sledgehammered into the conscious minds of people living with and without HIV/AIDS, without realizing that I too was one of the people. When I found out that I was HIV positive I had tons of question, but wouldn’t we all. When I found out that my CD4 was 94 and that I had AIDS I just wanted to curl up in a ball and die because the only real thing that I knew about HIV/AIDS at that time was that AIDS was indeed a death sentence and that there was no coming back from that.
I never realized until a couple of weeks ago that I too had stigmas against HIV/AIDS, and then it hit I too had stigma and discrimination against people living with HIV/AIDS as well. Being a person that identifies as a gay man I thought I knew everything about HIV. I thought I knew about all the ways that could protect myself from HIV and I thought that just because I had even dated two guys who were HIV positive that I was some kind saint, but I was the exact opposite because I found out that they were HIV positive I didn’t stick around, I didn’t try to make the relationship work. I did exactly what I feared would happen to me when my boyfriend found out that I was HIV positive, I left. I created some bullshit reason to end the relationship when the real reason was that I was afraid that I was going to contract HIV if I hadn’t already been infected by on them.
After those relationships, I really never looked at gay men the same. To me, everyone including myself, we were all just walking bubonic plagues just waiting to pass the virus to the next person. I know that sound criminal, and it is because to knowingly infect someone with HIV or any communicable virus or disease is a crime, but that’s the thing about stigma. Stigma and the lack of education are why so many people live in silent fear of the virus and people who have the virus. It wasn’t until I had the mirror turned on myself that understood HIV/AIDS stigma and discrimination but there was something else about stigma much bigger and scarier than public stigma and discrimination. It was the self-stigma that I developed the moment after finding out that I was HIV positive. So where does self-stigma begin and how does a person living with HIV begin self-stigmatize oneself, with misconceptions, stereotypes, lack of education, fear, and panic.
As mention in another article, I wrote “The Cycle of Stigma and how it affects HIV/AIDS and PLWHA” self- stigma too begins with the virus itself and the lack of education on HIV/AIDS and its transmission. Due to this lack of education, it opens the door for stereotypes, misconceptions, fear, and panic thus forming a conscious and unconscious prejudice about HIV/AIDS and oneself. Now I never thought of people living with HIV/AIDS as dirty, disgusting, hapless, hopeless, or helpless and I never thought of people living with HIV/AIDS to be sinners, victims, or unworthy of being loved. But I did think of them as drug addicts, whores, and someone being punished by God. I grew up in the south and this is what we are taught to believe especially within the African-American community. So I had my share of stereotypes of what I thought HIV was and who I thought HIV/AIDS looked like, but all of that changed the day that diagnosed.
Now I wasn’t a whore, and at the time I most definitely would have called myself a drug addict but I didn’t use needles, and I didn’t think that I was punished by God, but when I looked in the mirror I didn’t see any of that. I didn’t see me. What I did see was someone who was dirty, disgusting, hapless, hopeless and helpless. I saw a sinner, whore, a drug addict as if I just used a dirty needle, and a victim (being that I was raped two years prior). I saw someone who us was unworthy of being love, someone who was being punished, someone who was dying and being that CD4 was 94 I was most definitely dying. All of sudden all of thing that I never thought before about people living with HIV/AIDS I now thought about myself and why because I didn’t understand HIV/AIDS or people living with HIV/AIDS and to be honest when you are diagnosed with chronic illness understanding the illness is the furthest thing from the mind.
For months I was scared shitless to look into a mirror because now that I was HIV positive the only thing I saw when I looked at me was all the things that I was taught to believe about HIV/AIDS and people living with HIV/AIDS. “I am now one of them”, I would say to myself “one of them” as if I had been transformed into some type of sub-species human, but that is how I now saw myself. Every misconception, every stereotype, every depiction I had ever seen about HIV/AIDS was standing right there in front of me. I became a recluse never wanting to leave my room, only being comforted by the dark and removing every mirror from presence. I was person obsessed with beauty, but I no longer felt beautiful, I no longer knew who I was or what I was. All I knew is that I wasn’t me.
I tried to break the vicious cycle of stigma by putting myself out there and telling the world that I was HIV positive. Two months after I was diagnosed I posted 15 videos to YouTube with the first on being entitled “Stopping The Stigma” I had no clue what I was talking about or what I was doing, but it felt good to say to the world that “I AM HIV POSITIVE,” that was until the world reminded me exactly who I was “A dirty, disgusting, diseased ridden, homosexual that is being punished by God for living a sinful life that deserves to die in the most horrible way that a human can die.” For months I received email, comments, and text messages all telling me that I was dirty, disgusting, unworthy of love, unworthy to live, but worthy to die and just like that stigma pushed me right back into hiding causing me to remain silent, causing me to fear the outside world. I went into a deep, dark depression. I begin to abuse substances that I had never use before, to drink alcohol in access and when I thought that I couldn’t sink any lower I did, when I overdosed in attempt to kill myself six months after being diagnosed.
What pushed over the edge? Why did I attempt to kill myself no once but six times? Why did I cope with drugs and alcohol? Why didn’t I just let the virus kill me? Why did I remain silent for so long? When you have to face a world that had done nothing but brought harm to you some days 24 hours is too long to handle so you try to take each day hour by hour, moment by moment, but as the day passes fear, anger, sadness, anxiety, and loneliness attack you minute by minute until you break. That the thing about depression, a person can survive almost anything as long as they can see a light at the end of the tunnel, but depression is insidious. So insidious that it compounds daily making it impossible to see the light. So you give up before you reach the end of the tunnel and no matter how close you are to the light the fog that is riddled with fear, anguish, disappointments, panic, anger, discouragement, and anxiety keeps you locked in a room without exits, a cage without a key. You become hollow and when you become hollow you can no longer feel and when you can no longer feel you can no longer exist. That is the goal of stigma and discrimination, to beat you down so low that you can no longer feel so that you can take the stigma and discrimination, reflect it inwards so that you can no longer exist, but just because you stop existing doesn’t mean the stigma and discrimination goes away. It transforms into some bigger and even scarier self-stigma and discrimination or what I like to call a “suicide cocktail.”
Self-stigma occurs when people living with HIV/AIDS internalize public attitudes towards the virus and disease and as a result suffers numerous negative consequences as a result. (Corrigan, 2005). While acknowledging the role that societal and interpersonal processes play in stigma creation when internalized subsequent behavior can lead to social isolation and ostracism thus leading to depression, substance abuse, social anxiety issue and in some case suicidal thought, tendencies, and actions. Often equated with the perceived stigma that the public holds a person’s recognition of the prejudice and discrimination against because of their HIV status will lead to them to question their own worth and essentially lowering their self-esteem and self-efficacy.
Just like the cycle of stigma there too is a cycle of self-stigma which includes awareness, agreement, application, internalization, and noxiousness. Within the first step of the cycle, a person living with HIV/AIDS becomes aware of the social stigmas and prejudices against them. They then agree with the social stigmas and prejudices while applying each stigma to themselves. Next, they internalize those stigmas and prejudices believing them to be true creating a noxious dissension with the mind; which then leads to depression, alcohol and substance abuse, anxiety issues, and suicidal tendencies. Another related consequence of self-stigma is the “I am worthy” complex, in which self-stigmatization interferes with one self-esteem and self-efficacy. For example, a person living with HIV may be interested in dating but due to the social stigmas, they may question themselves asking the question “I am worthy to date or be loved by someone” affecting their self-esteem. This leads to people living with HIV/AIDS to ostracize themselves from society and public interaction avoiding situation where public disrespect is anticipated.
Self-stigmatization is a big issue within the HIV/AIDS community and is the first most deadly reason why people with HIV/AIDS all around the world killed themselves, but there are ways to overcome self-stigmatization and here’s how. First, you must understand that ignorance is bliss and that it comes in abundance as much as we would like to remove the social stigma and discrimination surrounding HIV/AIDS it is like pulling teeth without Novocain, you can try but it going to hurt like hell. We can’t change the minds of the ignorant (DONALD TRUMP) and the minds of the ignorant are the reason social stigmas but we can change the way HIV/AIDS and the people living with HIV/AIDS are viewed by speaking up, coming out of hiding, and showing the world that people today living with HIV/AIDS are everyday blue collar people. Unfortunately coming out the HIV closet isn’t exactly black and white or that easy for people living with HIV to do.
Strategies that vary in risk when it comes to HIV/AIDS disclosure At the most extreme, people may stay in the closet through social avoidance. This means keeping away from situations where people may find out about one’s HIV status so instead, they only associate with other persons who have HIV/AIDS. It is protective because no one will find out the shame but obviously also very restrictive and does nothing to combat social or self-stigmas. Others may choose not to avoid social situations completely keeping their experiences a secret which again does nothing. Another alternative is selective disclosure, this means that there are a group of people with whom disclosure is shared and a group from whom this information is kept secret, for example, one may tell family about their status but may keep this information from friends and coworkers. While there may be benefits of selective disclosure such as an increase in support, there is still a secret that could represent a source of shame which in my opinion is like feeding baby name stigma. Some people may choose indiscriminate disclosure in which secrecy is abandoned. They make no active efforts to try to conceal their HIV status or their experiences; they opt to disregard any of the negative consequences of people finding out about their status which is a great start to battle social and self-stigma but there is also any way that is 100 times more effective. Broadcasting and sharing the experience both positive and negative which means educating people about HIV/AIDS. The overall goal here is to seek out people to share their own stories, past history and current experiences with HIV/AIDS. In addition, educating others on the issues of people living with HIV/AIDS face broadcasting also fosters a sense of power over the experiences of being positive while defeating stigma and discrimination both social and self.
In conclusion, stigma is a societal creation that can only be described as prejudice and discrimination. Unfortunately, some people internalize the stigma and suffer significant blows to self-esteem and self-efficacy. Self-stigma, however, is not an inevitable curse. People in a stigmatized group do not necessarily turn that stigma onto themselves. For example research about racism affecting the African American community, psychological models believe that African Americans lower their self-esteem because of the former biases and prejudices about them that have dominated the culture, but what research consistently fails to show is African Americans may have higher self-esteem when they are aware of prejudices but do not believe it actually applies to themselves. In fact, many African Americans report ignorance as the reason for the prejudices. The same lesson seems to apply to self-stigma for HIV/AIDS too. Internalizing prejudice and discrimination is not a necessary consequence of stigma but a natural reaction. Many people recognize stigma as unjust and, rather than being swept by it, take it on as a personal goal to change it while others are unaware or unmotivated by the phenomenon altogether. There are those, however, who seem to apply the prejudice to themselves and suffer from it with lessened self-esteem and self-efficacy. I believe that these people might benefit from a program in which they learn to challenge the irrational statements that plague their self-identity. They might benefit from joining groups of peers who have successfully tackled the stigma. They may benefit from a program designed to help them come out about the stigmas that they face. In the end, the only way to truly conquer self-stigma to tackle it head on knocking down one barrier at a time.
1. Corrigan PW. On the stigma of mental illness: Practical strategies for research and social change.American Psychological Association; Washington DC: 2005.
2. Corrigan PW, Watson A, Barr L. The self-stigma of mental illness: Implications for self-esteem and self-efficacy. Journal of Social & Clinical Psychology. 2006;25(9):875–884