In 1985, The Normal Heart, a play about gay men in New York fighting back against government indifference to the AIDS epidemic was performed. It depicts the rise of the AIDS crisis seen through the eye of Ned Weeks, the founder of a prominent HIV advocacy group. In the play Weeks nurses his lover, who is dying from an unnamed disease. His doctors are puzzled and frustrated by having no resources to research it. Weeks tirelessly fights for his lover and so many others, like him dying from AIDS, to have their voices heard and medical needs met. The play depicts the legacy of people who died and survived the early years of the AIDS crisis. What is shown on that stage is true and very painful to watch but it was the reality of so many beautiful people who died in such horrible fashion. Now, here we are 30 years later and people living with HIV are still dying in a horrible fashion but it isn’t the virus or the disease that’s killing them. Instead it is our communities, schools, family, friends and all of those who are living free of the virus who are.
As you read my articles here on PositiveLite.com I don’t want you to just see the words that I am typing but I want you to comprehend those words. I want you to understand that the same battle that has been fought for the past 30 years is the same battle that is being fought today. Too many times have I sat in support groups and watched rivalries grow between what I like to call the “AIDS Epidemic Survivors,” “The 90’s Crusaders” and the “Millennial Warrior know-it-all.” We fail to realize that each battle that is fought between the different generations is only creating loss for the future of those living with HIV in the 21st century. Our battle is no different than it was in the eighties.
Sure, there have been great medical advances that have allowed people living with the virus to live longer and healthier lives, and of course, more people seem to be educated on HIV but none of that really matters because the real culprit that killed so many people living with HIV is not virus or disease but the stigma that surrounds HIV. Stigma, the fear of stigma, and discrimination are all one in the same, images of this mass epidemic only depicted by death sledgehammered into the conscious minds of people living with and without HIV. Despite the many health concerns people living with HIV may have it is the stigma that has become an even bigger concern. Stigma stops people from disclosing their status. Stigma stops people from getting tested. Stigma is why so many people live in silent fear of the virus and people who have the virus.
The truth is people should be afraid of HIV in order to guard themselves against it because fear equals caution, caution equals precaution, and precaution equals prevention. But you shouldn’t be afraid of people who have the virus. It is sad that we live in a world where so many people are so ignorant to global issues with HIV being one of them. Not only do people need to understand HIV, but also the people it affects. People living with HIV are looked down upon, cast out and exiled by society. Sure there are other diseases that are more difficult to fight and survive but what sets HIV apart from those other diseases is compassion and understanding.
As much as we all would love a cure of HIV, let face it, HIV is a chronic illness that doesn’t seem to be going anywhere anytime soon. So instead of creating wars between the generations we need to create bridges that allow each generation of HIV survivors, crusaders, and warriors to not only grow and learn from but also to fight against stigma, discrimination, prejudices, and those who are trying to take our rights to healthcare away.
A lot of people, especially young people, still don’t understand HIV or how it is spread. People still believe that HIV will jump out on walking down the street or in the grocery store and let’s not even talk about how people feel about being in a room or breathing the same air as someone who is HIV positive. People just refuse to believe that you can only become infected with the virus through unprotected sex or sharing needles with someone who is HIV positive. You can kiss, drink after, hug, shake hands, share a toothbrush or even swap spit with someone who has HIV and you will not become infected with the virus.
When I decided to become an advocate for people living with HIV I spoke with a lot of people who admitted that they found the thought of being HIV-positive or even getting tested for HIV too scary. They say that ignorance is bliss and they were right. The most common responses I received when asking people if they had HIV or had been tested for HIV was “I would rather not know” or “Why would I do that to myself?” This is true of the majority of people living free from the virus. But why wouldn’t you want to know? Why wouldn’t you want to get tested? We now know that testing and early treatment is not only prolonging lives for those living with HIV but offers effective prevention and decreases the risk of transmission.
When I found out that I was HIV-positive I never imagined how much my life would change; how many friends I would lose or how many friends I would gain but being diagnosed HIV-positive opened up my eyes and showed me the true colors of the world and the people who live in it. I too have been stigmatized and discriminated against due to my HIV status and even though I have grown to accept my status I still have moments just like everybody else living with the virus. I still have days when I am crying wishing that I could free be of this virus and disease, especially on those days when the neuropathic pains hit. Every cough, sneeze, or tingling in throat scares me. There are still days that I think about ending it all, moments to where I’m clutching on to a pill bottle wanting to sleep and never wake up. You just get so sick and tired of being sick and tired, but I’m surviving.
I never thought that I would suffer from depression. I never thought that I would abuse alcohol. I never thought that I would abuse drugs. I never thought that I would attempt suicide. I never thought that I would be HIV-positive. But if it wasn’t for HIV I wouldn’t be who I am today. I was once on a road of self- destruction and because of my diagnosis, I am now on the road to self-discovery. HIV is not the end my life. I can choose to live a normal life and have a normal lifespan but that is because I choose to fight, stand up, and be brave. I choose to fight against HIV stigma. I choose to stand up against HIV discrimination. I choose to be brave against HIV.