Photo: Courtesy of Zoe Ligon.
When I was 21 and was in the final semester of my undergraduate degree, I got two false positive HIV test results. In a matter of weeks, a balanced, sexually active college student became a woman who wanted to kill herself because of an illness she didn't have. After the call from my gynecologist in the spring of 2013, I experienced a completely new fear. Very dry and a little stressed, said to me in one go: "Your HIV test was positive, but then we carried out further blood tests and they were negative, so everything is fine with you."
I was in a daze, put the phone down, still not quite sure what had just happened, and called my father. I wondered if the first result might not have been the correct one after all? What if I was HIV positive after all? Was I just exposed to the virus now? I tried to recall the doctor's exact words, but I cried and spoke so quickly that I realized how little sense my words made. Although my father was just as confused and worried as I was, he calmly assured me that everything would be fine. To make sure he was right, I took the quickest route home and searched online for "false positive HIV test" - and a few important things came out immediately. False positive results are incredibly rare; they come out in less than 1% of those tested. In a forum I read about a false positive result that came out of a swab from the oral mucosa - but I had blood tests, which is a much more reliable test! I just made myself even more crazy. After this new information, I called my doctor again to find out exactly what tests were being carried out. Several hours passed before I finally got there, and I had endless questions. However, she didn't seem to understand me at all. Why should I have any questions? Why should I even worry about this?
HER SMOOTH TONE DRIVEN ME TO LIKE A TOTALLY INSANE DUE TO MY FEAR.
Perhaps she deliberately stayed calm so that I didn't get too upset, but her slippery tone only agitated me even more and I got further into the negative thoughts. I learned that three blood tests had been done: the ELISA, the Western Blot, and the PCR, also known as Direct Virus Detection. In short, the ELISA is an inexpensive, rapid test that most people do with standard STD testing. It is also the test that gave me a positive result. When you are HIV positive, your body makes antibodies to fight the HIV virus, and the ELISA tests whether some of these antibodies are already present in the immune system. When you get the result, it's just a positive or a negative. The Western Blot, which gave me a negative result, is basically a more extensive version of the ELISA that tests for more antibodies. But this test is more expensive and is only done if the ELISA is positive to confirm or refute the result. The final test, the PCR, tests the presence of the virus itself and determines the number of viruses in the body. Like the Western Blot, it is a follow-up test after a positive ELISA and is also used to determine the progression of the virus in patients who have already tested positive. This test also gave me a negative result. And yet I was completely beside myself all week after the first call. Despite the information I had received - I was negative on paper - I remained convinced that something was wrong.
I wondered when that fear would go away - if it would ever go away at all.
I spent a lot of time lying in bed staring at the wall, staring at my radiator, then petting my cat and staring at the wall again. I couldn't shake off the nervousness. I wondered when that fear would go away - if it would ever go again. I knew it wouldn’t change anything if I worried about it now. But part of me was still waiting for the call at any moment to tell me I was infected. And that I would be better prepared if I mentally empathized with the role of HIV-positive people. It was an absurd thought, but you don't notice it at that moment. In the company of a good friend, I found the courage to have another test done after about a week. Hoping to find a doctor who would be more sensitive to patients, I went to a specialty clinic for STD testing. The doctor there assured me that I would be negative if both the Western Blot and the PCR were negative. He said the ELISA was likely positive due to human error in the laboratory because only 0.2% of the tests are positive when subtracting incidents from contaminated samples. False positive results can be caused by pregnancy, autoimmune diseases, hepatitis B, and rabies, but I did not have any of these and I was not pregnant. I asked him not to give me any results until all of the test results were there. After I finally did everything in my power, my anxiety eased a bit. I couldn't do anything else. I was sure. I was healthy. I was just very, very unlucky enough to be in the less than 1% of people who get false positives. And indeed Not Being HIV positive was reason enough to celebrate. Life almost returned to normal for the first few days after my second round of testing - until the call came from the clinic asking the clinic attendant to come and see me again. I yelled into the phone to find out what was going on. At the other end, my doctor in charge joined the phone and told me that the ELISA had come back positive and that they were now waiting for the Western Blot and the PCR test. I was sure that was it. I had HIV. Two positive ELISA tests from two different institutions? No way to put it down to human error. That was the point where I lost the ground under my feet. I collapsed in the subway station and lay down on the floor. I cried without caring about my surroundings. I called my father and instead of just calming down, he said, “You may have it, Zoe. I can't pretend it's out of the way. ”Hearing the strong, confident father's demeanor fall off scared me, but it also brought me back down to earth. I wasn't being irrational, there was actually a possibility that something was wrong with me. One of my closest friends was staying with me at the time. As a diabetic with a sense of black humor, he would often joke how fucked up his own health was and then dramatically shoot himself off with the insulin syringe. He was the only person who managed to distract me from time to time for a moment and make me laugh. I don't know how I would have survived without him.
I'M AFRAID I WOULD NEVER HAVE SEX AGAIN ...
I was afraid that I would die of HIV / AIDS. I was afraid I would never have sex again - but most of all, I was afraid that I would never be loved again. One night before I went to sleep, my friend, who understood my deepest fears, said that he would love me and that he would have sex with me even if I was really HIV positive. It wasn't a pick-up and it wasn't awkward or awkward either, it was just his way of saying, “You are much more than a potential disease, you are a wonderful person, and if you should have HIV it won't change anything about it. ”At that moment I accepted my situation. I was powerless over her, and no matter what my test results were, I would have to go on living. I had to wait almost a week for the second round of my results. And again the Western blot and the PCR test were negative. I breathed a sigh of relief, but wasn't sure how it would go from now on. I wasn't HIV positive, but would I get false positive results for the rest of my life because I was in that 0.2%?
I have had 5 tests since then, all of which were negative; I still hold my breath briefly while waiting for the results.
Since then, I've had myself tested at least five times, and all of the tests have been negative. I still hold my breath briefly while waiting for results. Although I use contraception without exception, I am still terrified of AIDS. When worries get out of hand, I look at my western blot results, which consistently say “negative,” and feel my tension ease. I even kept a copy of it in my bedside table.
Sometimes I still feel like I'm putting my own HIV puzzle together. After the last test, for example, my doctor did not call on the day discussed and I immediately got into a downward spiral. I assumed that the ELISA had already turned out positive again. In the end everything was fine, but my two HIV horrors left visible traces. My father, who supported me and loved me above all else, confessed to me before he died that he cried every night for the few weeks after the first test. I hadn't noticed anything about it. He may have been terrified for his daughter, but he was 100% there for me. I couldn't have asked for a better father. I will continue to have safe sex and use condoms for both intercourse and oral sex. And no matter how crazy waiting for the results makes me, I get tested regularly. I have realized that I am not really "safe" from the disease, no matter how carefully I live my life.But I also know that I am much more than just my STD status, and that by not having the disease, I am in no way better than someone who has it.