What Happened When I Got My False-Positive HIV Test Results

Photo: Courtesy of Zoe Ligon.
At age 21, during my last semester of undergraduate studies, I received two false-positive HIV tests. Over the course of a few weeks, I spiraled from a well-adjusted, sexual college woman into someone who was ready to take her own life over a disease she didn’t have. When I answered a call from my Ob/Gyn in early spring of 2013 , I experienced a new kind of fear. In a rush of words and a harried tone, she said, “You tested positive for HIV, but then we did the more extensive blood work and that came back negative, so you’re fine.”

What if I was actually HIV+?

I was totally dazed. I got off the phone, still not quite sure what had actually happened, and called my dad. I wondered if the first result had somehow been the correct one? What if I was actually HIV positive? Had I been exposed to the virus? I tried to recall the exact words of the doctor, but I was crying and speaking so quickly that I knew I wasn’t making any sense. My dad, in spite of being as confused and concerned as I was, calmly assured me that everything was going to be okay. My first move in making sure he was right was going straight home and researching “false-positive HIV test” online. I found a few important things right away. False-positives are incredibly rare; less than 1% of people test this way. One other guy on Yahoo Answers had an oral swab test that was a false-positive, but I had received blood work not an oral swab, which is a less reliable way of testing. This newfound information had me on the phone with my doctor once again, ready to take notes on exactly what tests had been run. After waiting several hours to get in touch with her, I had a lot of questions. She didn’t seem to understand me at all, though. Why would I have questions? Why would I be concerned about the matter in the first place?

Her glib tone made me feel like I was totally insane for being frightened.

Perhaps she played it super calm so that I wouldn’t get too worked up (because again, I was negative not positive), but her glib tone made me feel like I was totally insane for being frightened. I learned that three blood tests were conducted: the ELISA, the western blot, and the PCR or viral load measurement test. The ELISA, in short, is an inexpensive test that most people receive during standard STD testing. This is the one I tested positive on. If you are HIV positive, the body creates antibodies to combat the HIV virus, and the ELISA tests for the presence of only a few types of antibodies your immune system creates. When you receive your result, you simply receive a positive or negative reading. The western blot, which I tested negative on, is essentially a more extensive version of the ELISA, testing for more antibodies. But as this test is more expensive, it is only used when the ELISA comes back positive to confirm or negate the reading. The last test, the PCR, essentially tests for the actual presence of the virus itself and tallies the quantity of the virus in the body. Like the western blot, it is a follow-up to a positive ELISA, and is also used to determine the progression of the virus in patients who are already positive. I received a negative on this test as well. Still, the entire week after that first call was a blur to me. Regardless of the information I had received — paperwork telling me I was negative — I remained convinced something was wrong.

I wondered when I would stop feeling so frightened — IF I would stop feeling frightened.

I spent a lot of time in bed staring at my wall, then staring at my radiator, then petting my cat and staring at the wall some more. I couldn’t shake the nervous feeling. I wondered when I would stop feeling so frightened — if I would stop feeling frightened. While I knew worrying wouldn’t change anything, part of me believed that if I could mentally assume the role of an HIV-positive person, I would be more prepared for the news if I eventually found out that I had been infected all along. It was an absurd thought process, but I didn't recognize that at the time. With the help of a close girlfriend, I worked up the courage to get tested again after about a week had passed. Hoping to find a doctor with a better bedside manner than the first one, I went to a clinic that specialized in STD testing. The doctor there assured me that if both the western blot and PCR tests were negative, I was definitely HIV negative. He figured that the ELISA was probably positive due to human error during the lab testing, as only 0.2% of tests are positive if you subtract instances of botched test samples. Things that can cause false-positives include being pregnant, other autoimmune diseases, Hepatitis B, and rabies, but I didn’t have any other health issues and I wasn't pregnant. I told him to make sure not to give me the results until all the tests came back. Since I had finally taken a step toward solving my medical mystery by getting tested again, my anxiety subsided a bit. I was safe. I was healthy. I was very, very unlucky to be among the less than 1% of people who receive false-positive tests, but not actually being HIV positive was worth celebrating. Life nearly returned back to normal for the few days following my second round of testing — that is until I got the call from the clinic asking me to return to the office. I yelled all sorts of things over the phone, demanding to be told what was going on. The receptionist put the doctor I had spoken with on the phone, and he told me that the ELISA had come back positive again, and they were still waiting on the western blot and PCR tests. I was sure this was it. I had HIV. Two positive ELISA tests from two different testing facilities? No way were we chalking this up to human error. That's when I really lost it. Under the street scaffolding, outside of the subway, I lay facedown crying, oblivious to everything around me. I called my dad to tell him, and instead of simply soothing me, he said, “Maybe you do have it, Zoe. I can’t act like it’s not a possibility anymore.” Hearing him break character as the strong, reassuring dad frightened me, but it also grounded me. I wasn't being irrational; there was a serious possibility something was wrong with me. One of my closest guy friends stayed with me for the nights following the call, as I waited for the second round of blood work to come back. A diabetic with a dark sense of humor, he would often joke about how his health was fucked and then dramatically give himself insulin shots. He was the only person who could succeed in brightening my mood, even if only for a moment here or there. I don’t know how I would’ve survived without him.

I was scared that I would never have sex again...

And the truth behind my layers of fear? I wasn’t actually afraid that I was going to die of HIV/AIDS. I was scared that I would never have sex again — but more than that, I was afraid I’d never be loved again. One night before I fell asleep, my friend, understanding my deepest fears, told me he would love me and have sex with me if I were truly HIV positive. He wasn’t hitting on me, and it wasn’t awkward or weird; it was just his way of saying, “You are much more than a possible disease, you are an amazing person, and having HIV doesn’t change anything about that.” In that moment, I accepted my situation. I was powerless over it, and would have to keep on living no matter what my tests said. I waited almost a full week before I got the second round of test results. Once again, the western blot and PCR tests were negative. I sighed in relief, but also wasn’t sure where to go from there. I wasn’t HIV positive, but I wondered if I’d have to spend the rest of my life receiving false-positive tests because I was part of that 0.2%. I had already been having 100% protected sex for the past year of my life (yes, condoms for blow jobs!) and continued to do so, but I also began telling each new sexual partner about my HIV scare. It was my way of “disclosing” my technically non-existent STD history, and I felt obligated to share my complete history.

Since then, I’ve been tested at least five more times and have only received negative results.

Since then, I’ve been tested at least five more times and have only received negative results, though I still hold my breath as I’m waiting for the read. While I am still irrationally worried about contracting HIV even though I have incredibly safe sex, I am also immensely thankful for the fact that I don't actually have it. When I'm really worried, I stare at my western blot results, which have every HIV antibody listed as “negative,” until I feel the anxiety dissipating. I even keep a copy stashed in my bedside table. In many ways, I still feel as though I am picking up the pieces from those terrifying weeks. As recently as last week, I found myself fretting over my most recent STD results when I’d realized that the doctor didn’t call me the day she said she would, and I assumed it was because I’d had another positive ELISA. Everything was okay, but my two HIV scares have left their mark. My dad, who supported me and loved me through and through, admitted before his death that he had cried every night those first few weeks. He might have been scared, but he was 100% there for me. I couldn’t have asked for a better father. I will continue to practice safe sex, using condoms for both intercourse and oral sex. And, no matter how much waiting for the results freaks me out, I will get tested regularly. I realize that I'm not truly “safe” from the disease no matter how cautiously I live my life, but I also know now that I'm so much more than my STD status, and that not having the disease doesn't make me any better than anyone who does.

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