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Bad Blood: On Having Hepatitis C

After my diagnosis, I felt like my life had become a maze of complicated secrets. I couldn’t shake the feeling that if people didn’t know, they didn’t know me.

January 31, 2019

Sarah Clyne Sundberg
disease vector

here is nothing like the thought of death to make you want to fuck. I should know because I found out I had a potentially terminal disease a few days before my 29th birthday.

I had health insurance for the first time in years and figured I should get a thorough check-up. “What do you want me to test you for?” The doctor asked. “Everything,” I said.

A week later, there I was at my contractor magazine job, staring out onto the 20th floor of the skyscraper next door. The phone rang. “You tested positive for hepatitis c. Have you ever used needles?” the nurse on the other line asked. “No,” I said. “Well, these tests turn out false positives all the time,” she offered. Further tests confirmed the first. At this point my understanding of the hepatitis alphabet was vague. I felt so perfectly healthy, I’d never used intravenous drugs, the diagnosis beggared belief.

The morning after I was diagnosed, for a minute or so when I woke up, everything was ok, and then it hit me.

They told me I was supposed to stop drinking. My teens and twenties had floated by on liberal amounts of hard liquor and all I could think was how I needed a drink now more than ever. I resolved to quit and did, but not before a night drinking to the point of violent vomiting between two parked cars outside my friend’s house, “Are you ok?” my friend asked when he came out to look for me. “Yes,” I was fine. Of course, I was fine.

I’d be fine.

My mind kept wandering back to when I was 17 and had a summer job at the medical records archive at a major hospital. Some files had yellow danger tape on them, warning of blood-borne disease. I remembered the thrill I got from opening them (I wasn’t supposed to) and reading what was inside. Sometimes it was HIV which seemed like a scary, if somehow known disease, but most often it was hep c, which I only dimly knew of.

Now I had hep c.

Google informed me that this was technically a deadly disease, albeit in an excruciatingly slow way, and not necessarily. Maybe my liver would start to fail in the next three, four, five, ten or 15 years and kill me, maybe it wouldn’t. At the time the available treatment was physically taxing and only worked in about half of all cases. An ex asked me what the worst-case scenario was. “I get liver failure and die.” The best outcome? “I live a long life and die of something else.” Not exactly quit-my-job and travel the world until I die or my money runs out territory.

Hepatitis c, a particular kind of inflammation of the liver, can be silent for years and even decades, destroying one’s liver very slowly, or not at all at first. I, for instance, only have very slight liver damage despite likely having had hep c for more than 30 years. It is commonly only diagnosed once a person begins to feel ill due to liver failure, cirrhosis, or liver cancer, at which point liver damage is typically so far gone, and the effects so systemic, it may be too late to do much about it.

It was also contagious, this virus I had. Anybody’s best guess is that I acquired it through a blood transfusion when I was a newborn, though I will never know for sure. Most people don’t show signs of infection until decades afterward, so hep c transmission is hard to pin down. For the virus to spread, an infected person’s blood needs to get into the non-infected person’s bloodstream. Sharing needles, improperly sterilized medical equipment, and blood transfusions are all effective vehicles. The two latter were more common before the virus was identified and named in 1989.

Less likely, but theoretically possible means of transmission include but are not limited to all the myriad of other ways we could get trace amounts of someone else’s blood in ours: Sharing rolled-up bills when sniffing cocaine, sharing nail clippers and toothbrushes. Also possible, though unlikely: Sexual transmission.

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As far as anyone can tell, penis-in-vagina sex doesn’t present a significant risk unless blood and open wounds are involved — in most long-term hetero couples studied, the infected partner has not passed on the disease. Other forms of sex present grey areas: There seems to be a significant uptick in hep c cases among men who have sex with men, maybe because unprotected anal sex is more likely to cause blood exchange, or perhaps some other factor that we haven’t figured out yet.

After my diagnosis, I became obsessed with trying to assess every possible way I might have been infected. What if it wasn’t the blood transfusion? Was it somehow my fault? That time I got my ear pierced at a dodgy shop on 6th Ave? Late nights of blow, passing rolled-up dollar bills among friends? Sex with the boyfriend who used to mainline heroin?

I eventually let it go; in the end, it doesn’t matter how you acquired a disease. The virus doesn’t discriminate, the result is the same; now you have it.

Instead, I turned my worrying to all the times I might have exposed other people: The time I hit my head on a radiator when I was six and bled all over my babysitter; Spitefully using my sister’s toothbrush for six months when I was a teen; Period sex with various exes.

“Well you seem to have tried a little bit of everything,” said the first doctor I saw when I asked him what risk I might have exposed my ex-girlfriend to.

“That’s disgusting! The blood you got was from some junkie,” said my father when I told him. “It’s my blood now,” I thought.

It’s more than possible my father is right. Watching a documentary from the 1970s, intravenous drug addicts talk about swinging by the clinic to give blood in exchange for pocket money and a sandwich. The blood I received as a newborn could well have come from one of them.

I wonder about that junkie sometimes. Where are they now? Probably dead, though I almost affectionately feel they live on through me. “They all died in those days before we knew what it was. Non-A, Non-B hepatitis, we used to call it,” said my mother, the doctor.

I had always prided myself on honesty, but after the diagnosis, I felt like my life had become a maze of complicated secrets. I couldn’t shake the feeling that if people didn’t know I had hep c they didn’t truly know me. And for them to know, I had to tell them.

Telling potential partners of my status was the morally correct thing to do. Besides, I quickly realized I couldn’t have any kind of real intimacy, be it a chaste make-out session, or even good conversation, if I hadn’t first gotten disclosure out of the way. “You seem to think I’m hot, but would you still be attracted to me if you knew I had hep c?” is a pretty major conditional to throw out there on a first OkCupid date. I did not always handle this well. Neither did my dates.

As stated, death does make you want sex badly. But I don’t mean to imply that my burning desire to fuck the pain away was entirely due to my newfound sense of mortality. I was already gleefully single, a year and a half out of the long-term relationship in which I’d spent the most of my twenties. I’d rediscovered Internet dating and also plain, old-fashioned sleeping around with random acquaintances. Both of which can be very rewarding when you’re 28 years old, into it, and have pretty loose parameters as far as age and gender are concerned.

Still, the possibility that my expiration date might be an earlier one than expected, lit a new fire under me.

Sex became not just about pleasure, but a necessary antidote. It is literally the opposite of dying after all. I didn’t just want it; I needed it. And there was plenty to be had.

There was the older man, who I’d have sworn was gay if I’d met him in any other context than a flagrant sex ad. He was leading a barely concealed double life with a live-in girlfriend and a steady roster of other ladies coming and going while she was at work. Even as the whole situation repulsed me I was more turned on than I’d been in my life. I kept that relationship up for more than three years.

So much else in my life was complicated, demanded thoughts, effort, a stiff upper lip. In his bed, for an hour or two, a few times a week, there was only him and me. Pleasure, pain. One hundred percent presence in my body. The comfort of a steady thing, without any demands or questions about a future I’d stopped trying to visualize.

A pretty powerful drug.

I was diagnosed a month or two after I met him, but couldn’t bring myself to tell him until weeks later. It was less the fear of rejection than the fear that this was the last person I’d ever sleep with who would see me as a young and healthy person. Once he knew it became part of the fabric of our relationship. His girlfriend’s mother had died from hep c. He had a good friend who had it too. Was the danger I presented extra spice for him? Was it for me? More likely we were just two people, each in the throes of our own crisis of mortality.

The diagnosis radically changed the way I understood and assessed risk. All this time I’d been using condoms, not stepping on dirty needles, getting my shots, and washing my hands diligently to protect myself from outside harm. In actual fact, I’d been the one harboring danger. Walking the line between loving myself, loving my body and protecting others became fraught. I no longer trusted anyone’s health status — least of all my own.

A sudden nosebleed became stressful when helpful strangers rushed up with tissues. I’ve never been the type to find my period blood gross, but now it was hard not to look at my Diva cup and see a disease vector. I became obsessed with the anxiety that I might bleed unaware and that it would somehow work itself into the bloodstream of whomever I was with.

Most of the time my partners and friends seemed to worry less than me, a relief, but also somewhat disconcerting. Where they so blinded by their like for me, or by the prospect of sex, that they didn’t care about their health? Then what other risks were they taking? Or did they just have a realistic take on what a very minor risk this was?

Then there were the times when people did freak out.

The man I met on OkCupid whom I didn’t manage to tell until after we’d hooked up (and he’d tried to talk me into bare-backing). I’d ended up in his studio, without really planning it, 20 minutes into our second date. How does one steer the conversation from “damn you look good in those shorts,” to “by the way, I have a disease that probably doesn’t spread through sex, but I can’t say for certain”?

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I told him on our third date. He listened, thanked me for being “so real.” Then ghosted only to blow up at me when I checked in with him, calling me a liar and worse.

He went on to apologize and like a fool, I saw him on and off for a year and a half after that. He often told me how healthy I looked. “You are, like a big bag of happy cells.” He seemed to fetishize my fitness, my health, the yoga, the sobriety, and vegetarian food.

Even as these comments felt like accusations, made me feel like a fraud, I couldn’t get enough of them.

One of the last times I lay naked in bed with him, he complimented my body, as he tended to do. I blurted out the question that had been the elephant in the room since our first painful blow-up. “Is it strange to you that I look so healthy on the outside and have a weird freaky liver disease on the inside?”

He laughed a strange little laugh and went on to talk about how impressive it was that I keep myself so healthy and how that’s attractive not just on a physical level but also “mentally, spiritually.” “You didn’t answer though,” I pressed on. Some questions are both simple and impossible to answer.

In any case, he dumped me shortly afterward, and we abruptly ceased all contact. I’d been chasing some idea of what could’ve been if I’d handled things better, now I was free of any delusion that I could fix things. Likely his behavior had less to do with me than I’d initially imagined; he and I had been equally blinded by our private baggage.

Then there was the office worker turned bike messenger who was studying to be a therapist. He talked a big talk about being a daredevil and a dom. On our first date, he deftly tied my hands behind my back, right there in the bar. Later he mentioned he had a lot of clients with HIV and hep c, “I don’t know what it’s like to stare death in the eye every day like they do,” he said offhand as if to impress me. I took a deep breath and told him I had hep c. Looking at him I could virtually see myself turning into everything he was afraid of in life.

Was I even “sick”? What does disease mean when you’re young and strong, have clear skin and thick hair and more energy than most of your peers? I became acutely aware of how precarious physical ability can be. I also became obsessive about feeling healthy, being strong, controlling what I could. I trained for 10Ks, half-marathons, marathons, because who knew when I wouldn’t be able to do that anymore.

And all through this, the fear at the back of my mind of rejection, the necessity of disclosure with potential new hook-ups, way before I’d normally feel comfortable revealing anything half that personal. You’d be surprised at the kind of information people offer up in exchange when you tell them you have hepatitis: Herpes, tuberculosis, sex work, addictions… none of which I would have known of had I not felt compelled to have “the talk”, sober no less, on the second date.

Before my diagnosis, I had a foolproof method for getting laid: Drinking heavily and falling into bed with whoever stood in my way. Now, rudely, I had to learn to deal with sex sober and put some solid “getting to know you” time between first impressions and outing myself as having a blood-borne disease.

There were times I chickened out of further interactions purely based on the sense that I did not want to be that vulnerable with this particular person. A skill I probably should have tapped into way earlier in life to assess whether or not it would be a good idea to get naked with someone.

Then, after more than half a decade of all this, after years of trying to get in on drug trials, and trying, unsuccessfully, to get my insurance to cover a new, insanely expensive miracle drug, I got an experimental drug, Viekira Pak, (for free!) and achieved what is known in medical speak as “sustained virologic response.” The virus was undetectable in blood tests and stayed that way for more than a year. As quickly as the virus had barged to the front of my consciousness, it left. Suddenly, a future lay ahead of me again. The possibility of decrepitude and death no longer loomed so large.

Then what? Would I live less intensely now that I no longer had to worry about getting liver cancer and dying at 45? Now that I could, would I drink heavily and enjoy casual sex without having “the talk”? Kick back and enjoy happy hours, a 9–5 workweek and cozy coupledom?

I did feel able to make longer-term plans without feeling like I was jinxing them. But I still felt the need to take it slow-ish with new lovers. And that old urgency to do as much as possible with the time I have. Frankly, despite what my doctor says, I’m not convinced I’ve seen the last of the effects of hep c.

Now I no longer need to worry about my blood getting in someone else’s wound when I spring a leak. It was a strange feeling the first time I had a nosebleed and realized I didn’t have to rush to stop people from helping me. Though that felt nowhere near as transgressive as the first time I fucked my partner while bleeding.

I don’t have that cloud of death hanging over me anymore. But once you lose your sense of immortality I’m not sure you ever get it back. What I am now is free to die of something else, and hopefully not soon and free to not worry about being dangerous to those closest to me.

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