“HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS” (http://www.avert.org)
Coping with an HIV/AIDS diagnosis can be hard enough yet the attitudes and actions of others can make the journey even more difficult at times. We are all human beings who want to be accepted, loved, and respected. We are always trying to live up to what society tells us is “acceptable” and fall into the favor of those that surround us. So what happens when such a life changing powerful event happens in our life, such as an HIV diagnosis, and we are confronted with facing the reality of how those who surround us really feel about us ? Many are so afraid by these unknowns that their HIV status goes secret for their entire life. Shame, guilt, and anger may entrap a persons mind, body, and soul when it comes to facing the opinions of others, even when we know they may be misguided. Others may choose to make the leap and face the harsh truths of who is really there for us and who is not despite life circumstances. Unless we live in a cave all our lives, Regardless of if we are open about our status or not, all of us who are positive and or affected by HIV/AIDS in some way, will face stigma at one time or another. It is an inevitable fact that has profound effects on peoples lives regardless of who it may be coming from, however even more so, when it is the ones we thought were closest.
Stigma has existed since the beginning of this epidemic when the disease that we now know as AIDS was once referred to and coined as “Gay Related Immune Deficiency Syndrome”. Despite this condition affecting many other groups, the general public simply focussed on the “main group” being affected by condition. Due to peoples varying views on homosexuality strong beliefs and ideologies engrained in their heads then transferred to a new virus that would grow to affect the world in an enormous way. People began to look at this as one groups problem, a group they had a particular problem with in many instances, however it didn’t stop there. More and more information began to come out how this virus could be transmitted sexually as did the news reports of increased risks for drug addicts and prostitutes. These have all been groups that have been stigmatized for centuries therefore it didn’t exactly bring upon too much sympathy from the general public when a deadly virus came along. Although people were becoming more and more aware this was transmitted sexually that same mind frame of this will never happen to me remained prevalent. Instead of education there grew a fear as it started to become more common amongst other groups outside the “typical” patients being afflicted. This fear was due to a lack of knowledge of the virus and an overall lack of compassion for fellow humans.
“Damnant quod non intellegunt”
Latin Phrase They Condemn What They Do Not Understand
The stigma was perpetuated in many ways and is a tragic memory to all long term survivors who went through that era in time. People were scared, people were afraid, people did not know how to handle this new virus which would soon become general sexual knowledge for generations to come. The high morbidity rate during this time due to lack of treatments was brought to the countries attention and instead of people reacting with compassion, many reacted negatively. Peoples views and feelings about death clouded any rational thinking that should have been going on. Several films have been made about this era in time such as “Philadelphia” and most recently oscar award winning “Dallas Buyers Club” and documentary “How To Survive A Plague”. This was a very real decade in our history, a dark one that took the lives of so many precious people, and serves as a reminder of how far we have come.
Despite the progress that we have made in terms of AIDS changing from a death sentence to HIV becoming a chronic manageable illness, a battle still is evident. You figure people would not react the way they did back in that chronicle of time because of how much we know about HIV/AIDS now as well as how it is transmitted. We are in the year 2015 and it has been over 3 decades since knowledge of the emergence of this virus however you’d be surprised to see how much stigma still exists. Granted we might have made some improvements in terms of anti discrimination laws for employment amongst other achievements here in the United States, but we have a long way to go. Not only here within the US but across the world, stigma still exists in very big ways and affects people on so many levels.
Stigma can be as “small” as someone no longer wanting to talk to you because of your status or as big as facing violence and or deportation from a country due to being infected with HIV. It can present itself in the form of words, actions, or laws that single out those who are living with this condition. It can also effect those around us who genuinely care for us including our friends, family, and loved ones. It prevents people from wanting to be tested out of fear of how people may react if they find out someone has received a positive HIV test. In many countries believe it or not it still can prevent people from pursuing certain careers and or having the ability to be employed, due to discriminatory laws still on the books. It has been the cause of people being incarcerated due to HIV being singled out in medically outdated transmission laws that put more of the burden of discussing HIV status on the one living with the condition as opposed to both parties taking responsibility for their own sexual health. It’s caused people to fall into depression and allow mental health to deteriorate to the point of suicidal thoughts and or attempts. It has broken up relationships and prevented new ones from being formed even if both partners are compatible simply due to a status. It makes people afraid to be open about their status and afraid to disclose. That fear that has existed against this virus from the beginning has now transferred into many actually living with and or affected by the virus in a very different form.
How can we fight HIV stigma you might ask? How do we change peoples preconceived notions that may be based on years of ignorance and seem to be going no where any time soon? How can we really make an impactful change that will help change the way this world looks and feels about HIV/AIDS? These are complicated questions that opinions vary on depending on who you may ask. It also depends on the individual circumstances of country to country as stigma exists on different levels in different areas. The biggest general thing I think we can do to help those living with and or affected by this virus is taking the judgement out of the equation. Regardless of how we reached this point in our lives, no one asked to get here. People have so much compassion for someone diagnosed with cancer but don’t always hold that same compassion when someone they know is dying of an opportunistic infection due to AIDS. We need to realize that while we are all responsible for our own sexual health, this can truly happen to anyone. It is a virus that doesn’t give a questionnaire before entering the body. It doesn’t care what we are, if we are a good person or not, or who we are sleeping with in the bedroom. The H in HIV stands for human and that is all that matters. We need to realize that we are humans, yes mistakes are made, however no one should be judged for ending up in this situation.
In addition we need to educate those around us about this condition as this will hopefully create a domino affect that will help more people become informed on the modes of transmission, how HIV works, and what people can do to protect themselves; condoms, PreP, TaSp, seropositioning, ext… Education is so important because as the latin phrase I quoted earlier states, people will condemn what they do not understand. The more that people become educated on this virus the less fear will be present. We don’t just need to be educating one certain risk group or one certain population but providing a real down to earth education for everyone so people have the facts. This won’t completely solve the problem completely but it will help put a dent in it. We can’t be the worlds teachers but we can all reach out to one or two people we know to educate them on the facts and take a couple moments to say, do you know your HIV status?
Another big component in my opinion is people coming out about their status. Now this obviously depends on each persons individual circumstances. If someone is possibly being faced with being kicked out of their home, loss of employment, deported, or facing violence as a result of disclosing their status in a public form then it is a much harder decision to make. For those of us able to do this it is something that will make the world see that this truly can happen to anyone. The longer this condition is kept a secret from the world, the more stigma will continue to manifest itself in the ugliest of ways. HIV/AIDS isn’t something that simply happens to someone else but it can affect someone close to you. Putting a face to this virus brings the human to HIV and that is what is the important part. Its simply more than a condition in a text book but an actual virus that many of us are having to live with on a daily basis. We need to put the focus on loving and supporting those living with this condition as opposed to putting others down. If there were only more love in this world, stigma wouldn’t be so prevalent, and that is something we have complete control over.
This is just a brief summary on stigma, some of the history behind it, and a few things we can do to help change the curve of a secondary condition that has followed HIV since its discovery. It would take an entire research paper to truly get into every detail of it and even then I am sure it could be elaborated more. Bottom line is that stigma is a reality for those living with this virus and something that we can be a part of fighting. We might not have a cure for HIV/AIDS as of right now however we can cure stigma one conversation at a time. I myself have been guilty of stigmatizing those living with HIV/AIDS before this happened to me. I’ve been fortunate to have a supportive group of friends and family however stigma still has happened to myself, especially now being in a serodiscordant relationship with a girl who is negative. It is not something pretty and something that should be fought at all costs because the lives of so many living with HIV depend on it! Lets incorporate more love in this world and less hate. There is nothing to fear , we are humans to, and we aren’t going anywhere anytime soon <3.
Thank you for reading and an extended thanks to http://www.positivelite.com who continues to share my blogs to those across Canada and North America. If you would like to contact me please feel free to get in touch with me at any of the following links/social media venues below.
-Joshua D Middleton