My HIV Story: IT Is What Nightmares Are Made Of

This is my first time sharing my story willingly so bear with me. Hi, my name is ****, and I have always been very prudent about who I share my temple with. I’d had only five consistent partners before I was betrayed.

It was a calm August evening when Ed* approached my car and started speaking to me in code. He said, “You’ll want to read Chapter 3 of that book we got for class.” I replied, “You ready?” and he responded, “Go!” and just like that, it happened. Ed was a football player and had a good reputation to uphold. I was the leading tenor of the university’s choir and my reputation was that of crème de la crème within the collegiate social structure, but it happened. I mean I was hot stuff: debate team’s founder and president, modeling team’s secretary, and the student government association’s health and wellness senator, and yet, I did not use a condom.

I did not see Ed for a while, but I trusted him. Then I noticed he started to behave differently, as though he owed me an explanation yet did not know what to say. He was contacting me at an abnormal rate just to check on how I was feeling or if I felt under the weather. I can’t describe the feeling of contracting a sexually transmitted disease because I felt normal. I felt like nothing could go wrong because I had slept with him and only him for a year, and I knew, or at least I thought I knew, he was not sick.

Then he started to demand that I not be on Facebook. He said, “Facebook is for thirsty people trying to get attention. If they are your real friends, they would have your number.” Being as gullible as I was, I went on a social media fast. This boy must really like me, I thought to myself because only men who are in love freak out over Facebook. I was so naive to think that everything was just that perfect. Little did I know, his baby’s mother had HIV, and she had outed him as HIV-positive via Facebook. I was not told by any of my friends because none of my friends were his friends. We were so secretive about us that no one even knew we knew each other, but then I started losing weight at an alarming rate. Again, being the gullible person that I was, I thought that the various health programs I had committed to were working; then… I was told.

I remember the day like it was yesterday. It was December 23, 2015, I was on winter break and went to a clinic in Chicago where they do rapid HIV testing and a full blood panel for all STIs for free. I got the blood draw, did the mouth swab, and then sat down and heard, “Your test came back and you are positive, sir.”

Death was upon me and I didn’t even notice. I didn’t even hear the nurse say positive; I wholeheartedly heard negative so I said, “Okay thanks for the results.” Smiling, I gathered my things and proceeded to the door. The nurse stopped me and said, “Sir, maybe you did not hear me right, but you are HIV-positive.” I stumbled back into the chair. Her words were like a dry, cold bullet, “Me? Positive? No, do the test again,” I pleaded. She then explained that the blood samples would take two weeks to process and confirm, however, it was conclusive from the oral swab that I was positive. She also explained the procedure of informing my sexual partners.

Now I had had sex with my ex within the past week, so I called him as soon as I got home. When we got off the phone, he was but I had already given the nurse his number and he called back and we just cried on the phone together. More or less, I was asking him to forgive me because I had not known my status [when we hooked up]. He told me that it would be okay, but I couldn’t take his word on that. I am from an African family that does not accept homosexuals. Back in Liberia, the fourth poorest nation in the world, having HIV meant that you would die a painful death, and nobody would show you mercy because they believe that by letting you die and broadcasting it to everyone, no one else would get sick. I felt nothing, I was nothing. I became was the absence of all the hopes and dreams I had gathered within me my inner being and was now a funnel; I always lost any and all hope that tried to enter of beaten hopes. I was so empty. Figuring out how I could get help was the hardest truth to swallow. I couldn’t go back to the clinic because I had church members who worked there. I couldn’t tell my family because they would turn their backs on me. So, the next day, I got a flight to Africa.

I felt that all I needed to do to escape my diagnosis was leave the USA and go visit my family, whom I had only met once, but it did not help. See, my family is from a different world: in the nation of Liberia, when people get sick, they die. I was hoping for just that: to die in Liberia. Just drop dead and perish, but I was not lucky enough to die like that.

The trip was originally supposed to be the celebration of my grandmother’s 82nd birthday, but it turned out to be me coming to terms with my diagnosis. It also made me realize how lucky I was to live in America, that I had health insurance, and that I would be able to seek medical attention in a private manner. Well, at least I thought I did. I spent two weeks in Liberia coming to those realizations, and when I returned to the United States, the hunt for medicine began.

I needed to get medication, and I thought that if I was to get it at school, I would not have to tell my parents. Little did I know, my university had strong ties within the area. I went to the nurse, and when she learned of my diagnosis, she laughed. Then I overheard her laughing on the phone as she told someone that I was at her clinic and that I had AIDS. I knew I was not safe from the word of my diagnosis spreading, nevertheless, I felt that I did not deserve safety. I was hot stuff at one point in life but now I was just burning; I felt that being exposed was my social punishment. Word spread like wildfire and soon, I became the #1 talking point of my university.

21 was my number. It was March of 2016 and 21 was the number of white blood cells I had left. She had the right to laugh. I was a fool, paralyzed in a reality where I had no resources. I started on Triumeq [HIV medication], but the individuals on campus knew that I was ill and started to bully me. I called Ed and asked him, “Do you have HIV? Because my world is falling apart, and I need to know why you did this to me.” He replied, “My health has not been compromised,” and hung up the phone. I haven’t spoken to Ed since that conversation. I went on Facebook and learned that he had gotten many people sick and that was another big thing at my school, so I dropped out for the fall semester.

I went home and told my family. It was the tiniest light amidst a sea of dark despair. They cried for three weeks. No talking, no consoling, they just cried.  At the end of the third week they said, “You are our only son what bush can I throw you? I can’t leave you, but, my God, this is just too hard to bare!” That was when I knew my family would always love me, but I came to find out that society was a different animal.

While home for the remainder of that fall semester, the narrative at the university became that I got the football team sick. When I went back for the spring semester, I was getting confronted from all levels of the university; I mean teachers, students, staff, parents. And all I could say was they got me sick; I was not sick until them. I was dealing with drama more than classes, and I was always arguing to the point I was failing. My classmates used me as a scapegoat to release themselves from the guilt of their own sexual misconduct. I started smoking weed and using meth just to escape. I left school again and then returned, but scandal after scandal came out with me in the middle of every story, but, deep down in my heart, I knew that it shouldn’t have been me; it should’ve been Ed. But Ed was so popular that no one wanted to blame him. My friends turned against me, and I was even attacked at a party.

I felt my life was an island in the middle of a never-ending storm. I just wanted to die. Then my mother and father came to the school and demanded that I went home with them. They told me to forget the college and that my peers were weak and wrong. At this point, I was just abusing drugs, and my parents knew about everything that was happening, so I knew going home was the right thing. I withdrew from classes, packed up my apartment, and went home. I thought that was the best solution but, it was not because, as I stated, I had picked up a drug addiction. It took me a year to figure out I had a problem because I had every excuse as to why I needed drugs. I got into a relationship that I thought was good because we both had HIV, but that soon became a nightmare when I found out he had cheated on me and had given me herpes, amongst other things. After learning that, I gave it all up, checked myself into a drug rehabilitation center, and completed seventy-seven days of treatment.

Living with HIV is like living with a sign attached to every facet of your life. You have to live a life better than you could ever imagine, but, now, in a body unwanted by everyone. You have to live because if you get pneumonia you could live no more. You have to live because there is someone out there [with HIV] who needs to know that they are worth existing. People without HIV just look at people with HIV as this cursed person, someone who is less than. I am not less than. I am the next international music sensation; I am the next leading scientist; I am next for greatness. You feel that you have to be something because all that you are is nothing. See when you are overweight, there are ways to become skinny. When you don’t like the way you look, there are way to alter your appearance. However, when you have HIV (or, in my case, AIDS), there are no alterations, healings, or remissions because all that can shift on a dime. Because of my insurance, my medication costs $3,000 for 30 days, so there’s always a chance that I might not be able to afford it. You never know how lucky it is to be normal until normal is all you are fighting for. It is like a mental illness that deems you’re unfit by society’s standards.

Today, I am living free, but yesterday I was trapped within my own flesh, and tomorrow I might not want to wake up. The time spent between those ideas are moments I need to use to fulfill my purpose in life. I ask myself what is purpose when there is nothing left to live for? Why is there not a cure? Why do they just want to make money out of my sorrows? Why can’t I fix me? Why can’t God fix me? These are the questions that travel through my mind, day in and day out. What if this person finds out about me and they reject me? What if I get my dream job but my coworkers turn their backs on me [when they find out]? What if I die and my story is written by those who hate me? Why does nobody love me, when all I have is love to give? Then people say, “Well you are undetectable.” But what is undetectable but a few weeks of missed medication? I will soon be cut off my parents’ insurance and the search is already in progress. The search for normal, the search for acceptance, the search for love and happiness. This is all I can do in my days of long suffering. This is all my life has become. So, if you don’t have IT, then don’t get IT because IT is what nightmares are made of.

*This essay has been modified to maintain the original author’s anonymity. All names have been changed.