I Thought PrEP Would Put a Stop to Freaking Out About HIV—I Was Wrong
Part 11 in a Series on PrEP by PositiveFrontiers.com
Jake Sobo

When I first starting taking Truvada last October, I thought that I would finally be done with the incessant freaking out about HIV and self-diagnosing that many HIV-negative gay men go through on a regular basis. If you are (or have ever been) an HIV-negative gay man, you likely know what I’m talking about. You wake up in the morning with chills—or wake up at night feeling feverish. Almost by instinct, your hands fly to your neck to check your lymph nodes. The internal monologue begins. “Are they swollen? They feel lumpy?!? Is that normal?” Suddenly, you’re in the bathroom with a thermometer lodged in your mouth. “Do I have a fever? I feel fucking hot in this sweatshirt. Am I sweating? Jesus Christ, I’m fucking sweating!”

Of course I was sweating. The heat was on in my apartment and I fell asleep in a sweatshirt and under three blankets. But nevermind the facts. The mind is a powerful organ, able to repeatedly convince me that those beads of sweat are signs of something much worse than overheating—it’s gay cancer! Cue the horror music.

By the time I started taking Truvada, I had been fucking guys for 15 years. I can safely estimate that I’d have something just short of a panic attack every 3-6 months during those 15 years. That’s a lot of anxiety to cope with, needless to say. I had hoped that PrEP might finally put a stop to that ridiculous cycle of fear and acne-inducing anxiety. But I was wrong.

Last weekend, I woke up feeling… off. I had the chills. I felt feverish and a bit nauseated. Now, unless you live under a rock, you know that we’re in the middle of a gigantic fucking flu epidemic. I had spent an hour on the elliptical machine just days prior watching CNN reports with bleeding maps of the United States, highlighting the massive epidemic that was sweeping the country. So naturally I concluded that… I had seroconverted.

I spent the entire day trying to figure out my symptoms. Were my lymph nodes swollen? They didn’t feel swollen—but maybe I wasn’t looking in the right place. I felt sick, but only mildly so—like a very weak flu. Ah, of course. It must be the Truvada. I had seroconverted, but the sickness associated with it was lessened because I was on Truvada. Of course! Bing! Genius.

I’m not a medical doctor. I have no training to come to such an outrageous conclusion (seriously, I have no idea if or how Truvada would affect seroconversion sickness). But by midnight Sunday night, I was downright certain. I sat on my computer, feverishly researching the newly available rapid, at-home HIV test. I was THIS CLOSE to making a midnight run to CVS to shell out $40 for the test, when I finally managed to calm myself down. I reminded myself that there was a national flu epidemic and that I had just had a viral load test for HIV a month prior. And even if I had seroconverted, a rapid test would be unlikely to pick up such a recent infection.

Of course, that didn’t stop me from heading to the clinic the next day to get a free rapid test, which unsurprisingly came back negative. It is possible that I am in fact HIV-positive and that only a viral RNA test could pick up such a recent infection. But I asked myself what was more likely: that I had contracted the flu during a massive flu epidemic in the U.S., or that I had contracted HIV while on Truvada?

In the end, this is one of the things I hate most about being HIV-negative. And before you go on about how it’s because I’m engaging in such risky sex, let me point out that gay friends of mine who have the most boring sex lives in the world report similar experiences—perhaps less frequently, but nonetheless frustrating.

What do you do to help avoid or assuage the self-diagnosis spiral of panic? I’d love to hear your thoughts! Leave a comment, or shoot me a note at mylifeonprep@gmail.com.

Jake Sobo is a pen name used for anonymity. Jake has worked in the world of HIV prevention for nearly a decade, and is eager to share his experiences taking PrEP. Having closely followed the development of PrEP from early trials to FDA approval, he was excited to give it a shot when it was approved for use among MSM for preventing HIV. He has spent the better part of his adult life having as much sex as possible while trying to avoid contracting HIV, and started taking PrEP as a way to help him stay negative. He is well aware that the drug is not 100 percent effective and that he could test positive; while he hopes that does not happen, he knows that he can rely on his numerous HIV-positive friends to deal with that situation should he seroconvert.

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  • 16
  1. onprep82 posted on 01/23/2013 06:25 PM
    Well, you should be worried if you've been barebacking as a bottom left and right, specially if people have come in your butt.

    We don't have real world data of how effective is PrEP with daily use, while it seems to be high, it's unlikely to be 100% protective so maybe you should employ some risk reduction techniques, like serosorting, no ejaculation and obviously condoms, but I'm assuming that's out of the picture for you.
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  2. Kevin Cheeseman (Squirrel) posted on 01/23/2013 08:44 PM
    HAHAHA, this was me for my first few years on PrEP, I found it easier as I went along, sure I still have the freak outs but they are far less frequent and drastically less dramatic . I remind myself that the chances are pretty slim and most of the common knowledge "facts" out there about safer sex for gay men is a good decade out of date. Barebacking even with some who is positive, and on meds is statically less likely to transmit then someone who "tested clean on 10/26/12"

    Hell people are still using the 42% effective number, (really a 92% to a little higher than 99% if taken 7 days a week at regular intervals, according to the PrEP ole study) and UGG condoms condoms condoms. I still havent found a study that shows how effective they are for anal sex and actual proper usage that wasn't from the 90's.

    I just remind myself, that if I am going though all this, and I still somehow seroconvert, I better start playing the lotto more, cause if I contract HIV with my luck at playing the odds I should win the jackpot.
    1. Kevin Cheeseman (squirrel) posted on 01/23/2013 08:54 PM
      @Kevin Cheeseman (Squirrel) Sorry 44% not 42% (stupid hitchhikers guide)
    2. TomásBrewster posted on 01/23/2013 09:34 PM
      @Kevin Cheeseman (Squirrel) Basically you're a dead man walking? The ARV Death Movement is so indoctrinated it's freakin scary. face palm!
  3. Benjamin posted on 01/23/2013 09:42 PM
    As an HIV+ man I appreciate that you share your experiences. The more we can have conversations about all the tools in the toolkit for preventing HIV, the better. I agree that the continual anxiety of becoming positive is something that is very real and doesn't get much attention but it should.
  4. Ed Garren posted on 01/24/2013 08:48 AM
    Sorry you live in such fear and self loathing. These issues go far deeper than dodging a virus. They are about desire to live, fear of death, believing all the "unworthy" stuff that a very sexaphobic and homophobic society throws at us constantly, being different in a world that at best "tolerates" (but NEVER celebrates) our "difference."

    Thank you for putting it out there to discuss, for sharing yourself. That's how we grow. The other thing is, make peace with death. Martin Luther King said it best, you can't really live life till you've made peace with death. It will also clarify for you what you're going to do while you're here, how you're going to live, in love or in fear.

    This virus has been around for, and a part of my life, for virtually all of my adult life. It wiped out most of my peers, and defined the lives of two generations of Gay men.

    Bottom line, live well, live responsibly, celebrate each day, you could get hit by a truck tomorrow.
  5. Gus Cairns posted on 01/24/2013 09:28 AM
    I sympathise at second hand, Jake. I'm HIV+, my bf is HIV- and every time he feels off he's convinced he's "got AIDS" (a phrase I've failed to stop him using). Worse, he's a doctor! He even put himself through the entirely unnecessary agony of 3 weeks of PEP once because he got a tiny needle scratch from an HIV+ patient...
  6. andy posted on 01/09/2014 06:23 PM
    DON'T GET CUM IN YOUR ASS! This is not brain surgery. Yes there are all these anecdotal stories of the guy with bleeding gums that got it from pre-cum when giving head but really, every single gay guy I know with HIV let a guy fuck him bb. Every single one.
  7. John posted on 01/21/2014 07:42 PM
    Jake, I too appreciate your thoughts on PrEP, barebacking, and gay life in general. This topic provokes such an instantaneous knee/jerk reaction--especially among gays. Personally, I don't know why the "safe sex adherents" seem to forget something that's a guarantee for all of us: We all die, if not from one cause then another. Case in point: My partner of 13 years was very bareback phobic, and didn't allow himself to enjoy that connection that comes from natural sex between men. (Yes, barebacking *is* natural. Condoms are not.) And then one day it happened to him. He died. Of a stroke out of no where. Not just one stroke, but 5 to the brain stem. So, to the condom nazis I ask they also be vigilant against strokes! Gays die from heart attacks too! Cancer! Cancer kills! And in the midst of all of the hype and stress fighting our cause célèbre, we'll just forget that life is to be enjoyed and loved.
    1. DW posted on 03/23/2014 11:23 AM
      @John John, I'm sorry for your loss of your partner. But "condom Nazis?" Really? The Nazis killed millions of people. So has HIV/AIDS. People concerned with halting the spread of HIV are the opposite of Nazis, even if their methods differ from yours.

      As for "natural sex," a term seemingly invented to stigmatize condoms: it sounds as contrived as "natural marriage," coined by the religious right. Mattresses, lube, cockrings, online hookup apps and poppers are not "natural" either. But I like them, they enhance my sex life, as does the way I can care for my and my partners' well-being by choosing to use condoms. No one is breaking down your bedroom door in jackboots to force you to do so too.
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