What would you say to a friend that was scared of taking an HIV test? We asked you to tell us about your experiences testing for HIV, and how you felt in the period before and after you got your results. Young people from across southern and eastern Africa sent us their videos via WhatsApp – we selected a few of them to put together in our new video: Afraid of HIV testing? #KnowTheScore. Their message to their peers is clear. Knowing your status gives you the freedom to live your life! Whether you test positive, or negative – it’s always better to know.
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I do not generally think fear tactics work with anything. Sure, there are some who may get scared and get tested…but, many more will pretend it does not impact them at all, because of the fear. They hear all about who should get tested, they realize they may fall into that category and therefore get too frightened. Sometimes people ride out their last negative test result, even though they have experienced risk time and time again. I also, do not use the word “fear” period. If we educate people and make the testing process more welcoming, as opposed to fear-based, and reduce the stigma around HIV, people will get tested.
I think fear does more harm, but it should not be a reason to be unaware of your status. I believe that people fear knowing the truth, let’s say you know you have been practicing risky behaviors and more times than not you have put yourself in some kind of situation where you have to ask yourself, “is this in my best interest?” What I mean by that is if you are a sex worker and you are doing things for money, you are not assessing the risk or harm that can come to you but rather on how much food, or your rent can be paid. It does more harm if you fear knowing your status because cannot address what you do not know. If you are not addressing the issue than you are putting your life and others at risk. It is 2019, the stigma associated with living with HIV/AIDS still exists, but we have to be willing to fight the stigma and get people into care. Fear can be good because it can keep you on the straight and narrow. You can practice harm reduction so that the risk is minimal but you can still enjoy yourself. Or Fear can be used against you, and that happens when we become afraid to get tested and know our status. Knowledge is Power and knowing your status is the key to TREATMENT and living a long healthy life.Ultimately we know deep down inside that on the other side of every fear is a freedom. The freedom to choose to get tested, if necessary to get into TREATMENT and live life unapologetically!
Fear is a double edged sword, it cuts both ways. On one hand fear is a great motivator in using protection and having safe sex. But fear also gives HIV power. It keeps people ignorant. Whether it is ignorance of their status or ignorance of the disease and how it spreads/lives. Fear is both a positive and a negative, it is also neither. It is how we use the fear, how we let it affect us as to how it is defined. Fear can be beneficial and harmful in regards to HIV. I, for one, believe fear does more harm than good. It is because of this fear that I waited so long to be tested and once I was tested that fear quickly turned into denial. I almost died because I was afraid of accepting the fact that I was positive. But that same fear that almost killed me could be saving someone else’s life. Like I said, fear is a double edged sword.
In the beginning HIV was nothing but fear for me. Because in 1983, my father died, he was a person who used intravenous drugs and contracted AIDS. It was one of the scariest things I had seen at such a young age, I was 16 at the time. Today, things are so different from the 80’s. We have come so far from taking 15 pills a day that had so many side effects to ONE pill a day and no side effects for most. I feel like using fear will not motivate but will only perpetuate the stigma that is associated with HIV. In fact so many people today still do not want to be tested because they fear being judged, neglected, and for some pushed out of their family. As someone who is living with HIV, I use my voice to let others know that there are ways to keep from getting infected with HIV, but that if they are they will live for a long time as long as they take their medications. Every since I decided to be open and loud about my HIV status my life has become much more satisfying. I am blessed to have an amazing family that supports all that I do. I have coworkers that love on me and encourage me to keep pushing forward in all that I do. When I am out speaking to others about my journey there is something so fulfilling about having someone come up to me and privately expose their status by saying, “Me too!” Not only am I here to let others know that it is going to be ok, it also reminds me that I am not alone in this fight and that I no longer have to suffer in silence. We must continue to educate and let the world know that HIV lives matter, that we matter, and that I matter.
Growing up during the 60s my parents always placed the fear of God in me. I promised myself I would not use that same tactic with my own children (I think I succeeded). But when facilitating a support group, or speaking on a panel I do find myself at times saying a few things that I hope will frighten someone into taking care of their health or stop using drugs. Being nice, holding people’s hands, or babying them while trying to educate them about HIV/AIDS prevention and/or treatment is not going to get their attention. I am trying to help people learn how to fight for their lives! I do inform them if they are drinking and/or doing drugs what the consequences are, especially if they are taking them along with their HIV/AIDS medications. I speak with people about engaging in drug holidays or skipping days, taking over the counter medication or anything that is an herb without first discussing it with their doctor. I let people know the risks of doing those things. And yes fear is being used. I add new reasons to my list so I keep finding ways to put fear in people. At the end of the day I do use Fear to educate and help to explain and discuss HIV/AIDS. But I do it gracefully.
To answer this question I must resort back to mental health which is really prominent and something that I am personally dealing with this year. So to answer this question is difficult because for someone whether it be a provider, a friend, family or social worker to approach an individual that is HIV negative with a fear tactic it plays on mental health and that is something that not only am I but many others dealing with on a daily basis. So NO fear is not a good way to combat keeping a person HIV negative.
Well it depends whether your fear is rooted in stigma or something else. Fear could make an individual want to fight or run from such a life changing diagnosis. I would also say that fear can cause harm especially to those in communities that have been placed at risk and lack the resources and support systems to navigate effectively through those fears. Fear should not be the only major factor in deciding whether or not to get tested. Being an HIV survivor and undetectable I have fear on a daily basis. Becoming resistant to two regimens since being diagnosed in 2004, and having no other regimen options at this moment I fear is this gonna be my last day of taking pills that has saved my life and has also allowed me to be my best self living with HIV? My final thought is, we have the ability to give life and meaning to words, so FEAR motivates me to do everything possible to continue to live as long as I can. As I continue to make decisions in my life to achieve the best outcomes fear will always be in my tool box.
For years our parents have been using fear as a tool to raise us. First with the word NO or NOT as they sometimes would tell us. Teaching us not to run into the streets by the reaction of possible death on their face, but it was always accompanied by knowledge and wisdom when they educated us on why this was so. While fearful we were willing to accept it. The fear today has been ushered into our homes through our beliefs, practices, and culture. We fight against science, faith, government and religion. So today I can see why so many are confused – not afraid, scared, or fearful – but confused. They are confused by the different sources of information coming at them. I offer them this truth, ME. Our stories are not made up but are real life experiences we speak TRUTH, so fear can die. Do not be afraid, find your TRUTH and tell it.
When it comes to fear and HIV, I think it can be both good and bad. In the early days of the epidemic people feared testing because the stigma was prevalent everywhere and a cure or surviving seemed to be hopeless. Present day I think there is still fear when it comes to testing for HIV because there are people who just do not want to know their HIV status so they will not have to disclose to their sexual partners, and/ or deal with knowing they are HIV positive. That can be bad because they could be transmitting HIV to others and destroying their own immune systems. Then there are people who genuinely fear contracting HIV and are motivated to use prevention methods such as, safer sex, abstinence, knowing their partner’s status, U=U, PrEP and regular HIV testing. This kind of fear can stop people from contracting HIV or transmitting it and that is a good thing.
Personally when sharing my story or information about HIV. I chose not to do the scare tactic or enforced motivation to stay HIV negative. Becoming diagnosed with HIV can happen to any human being. I am unsure if using that tactic will do harm or not. The main thing is making sure a person receives the correct information. Even if the person becomes positive it is all about making sure that individual has access to the necessary resources. I keep it real with information about HIV as well as my story. Being humble and relatable is all that matters when it comes to any person getting the correct information. Even down to that preventable methods are available such as PEP and PrEP.
Fear is the reality for many of us living with HIV. For some people, particularly young LGBT runaways and those that have been expelled from their homes, they see those living with HIV, having access to housing and other sustainable factors and say “hey why not?” So my fear is that young people will become positive in order to have a roof over their heads and food in their mouths which I totally understand to be honest. Still some people will fear HIV no matter how much science says U=U, because we have not broke down those myths and stereotypes in society.