Fridae

"You don't have hepatitis," my doctor said.

He looked again at my palms and closely into my eyes.

"You aren't jaundiced, and you look fine. Why do you think you have hepatitis?"

I didn't even know what hepatitis was before the previous weekend. I was in the California wine country Thanksgiving weekend, 1992, with my lover and a friend of ours. After the first couple of days, I spent most of the time sleeping, feeling dully nauseated, and unable to eat -- very unlike me. Which is why our friend, who had had hepatitis A, told me to see a doctor.

After explaining why I was concerned my doctor did some thumping and groping around my abdomen, and when he poked below my right ribs, I let out an "ouch!" Another poke to confirm; another "ouch!"

"You've got hepatitis," he announced.

I was astounded at his about-face. "The reason it hurts is your liver is swollen. I can feel it," he said probing under my ribs.

He took blood (what seemed like a few quarts) to test and a week later the results came back: hepatitis B, the nasty one.

In the meantime, my lover had to be tested. He ultimately came back negative, and got vaccinated, and my doc gave him a gamma globulin shot protecting him for the six months before the vaccine kicked in. Telling all of my friends was humiliating, especially telling the friends I was intimate with enough to kiss (or more), that I had a contagious disease, and that they had to get tested.

I dealt a lot with humiliation those first weeks after my diagnosis. Having any illness is bad enough in our society, but when it is associated with sex and it can seemingly spread to "innocent" people, it's even worse. It was hard to tell my family that their goody-two-shoes son/brother/uncle had hep B, and that they had to be careful not to eat off of anything I had touched. Even harder was telling my lover's family, whose religious fervor was already making my acceptance a big enough issue.

"Why can't you drink?" people would ask at parties, trying not to sound too patronizing or alarmed. "Where did you get it?" Everyone asked. I wondered. My doctor had no concrete answers. It probably happened 60 to 90 days before I felt it. I got it through blood or bodily fluids. Sexual contact? It could have been. Funnily enough, every liver specialist I have spoken to in the nearly ten years since my diagnosis has had a different attitude towards what caused it.

"It was sex! It has to have been�" said one. "It's so easy to get, you might have picked it up from kissing," said another. "That's ridiculous," said another. "It's either sex or needles."

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The "where did you get it?" question was complicated by my being in a long-term relationship. While my lover and I were honest and open with each other about our non-monogamy, I hadn't mentioned any outside encounters during the last 60 to 90 days. But there had been one. Plus we agreed to be "safe" with our outside liaisons (which I thought I had been), but most literature pointed to unsafe sex practices as the smoking guns with hep B.

I was feeling guilty for being sick, guilty for jeopardizing my relationship, guilty for putting my lover and my friends at risk and most of all stupid for getting the disease at all. Then I found out it could get worse.

Ninety percent of HIV-negative people who get hep B feel really sick for a few weeks or months, then recover and develop immunity to it. But ten percent don't. They continue to have the disease, and, often, it ultimately destroys their liver and them along with it. People with HIV are even more likely to get chronic hep B -- 90 percent of cases become chronic. Six months into my hep B, which never resulted in my being jaundiced or feeling particularly sick (I felt like crap for a couple of months, but I never missed work because of it), my new doctor said I still had it, which meant I was officially part of that ten percent.

I had "chronic" hepatitis B.

I got the speech from the doc about the likelihood that I would die from liver cancer or cirrhosis of the liver, etc., etc. Now I felt really terrible.

WHY DIDN'T I GET VACCINATED?!

I still ask myself that question today, but walking out of my doctor's office that day, it's all I could think about. I remember the group session in 1985 when my therapist announced there was now a vaccination for hep B and we should all get it. Sure, it cost a lot ($100!), but it was well worth it, he said. "Whatever," I thought at the time. "I'm a straight A student, and I'm not into sex like so many of these freaks in my group. It won't happen to me. I'm always healthy." As AIDS became a larger part of everyone's lives, and my sex life developed, I practiced the "almost always" school of safe sex and felt untouchable by other STDs because of it. Whoops.

A year or so after my doctor gave me the "chronic" news, he told me about a new, revolutionary treatment for hep B, the first ever. Interferon offered 50/50 odds at curing it. He warned me about its flu-like-symptom side effects and about the real hitch: I would have to inject it into myself every day! And for two years I did just that. The flu-like-symptoms only lasted the first few days. There were also some weird side effects like occasionally an eyelash would grow to be 12 inches long, and I never got any colds. But self-injection was the biggest downer. Plus I had to keep the medicine refrigerated which meant travelling was a real hassle. I remember my lover buying frozen peas at a market in Greece to keep my medicine cold. And the time the customs agent at the airport freaked out about two weeks of dirty needles in my bag (you can't just toss them out in your hotel room trash can).

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After two years, the disease was still with me, so my doctor took me off of the Interferon. The first few days after I felt like I had drunk 15 cups of coffee. And at my next haircut, my barber pointed out the quarter inch of hair growing along my hairline. I was just happy to not have bruises on my stomach and my thighs, the places I had used for injecting.

A few years after I stopped the Interferon, a new drug, Lamivudine (3TC), was approved for chronic hep B. I've been on that now a couple of years, and while it has greatly reduced the destructive enzyme activity in my liver and taken me one step closer to being cured, it still hasn't done the trick.

Neither of these treatments stopped me from trying other options. I eat as healthily as I can, and I take lots of vitamins, especially vitamin C. To take as much burden as possible off of my liver, I don't drink any alcohol (parties become very boring when you're the only one not drinking), I never do drugs, and I keep away from coffee. Additionally, I try to sweat out as many toxins as possible by doing lots of aerobic exercise and spending time in the steam room or sauna at the gym.

Speaking of the steam room, hep B has greatly altered my sex life. Nothing turns people off faster than saying, "I have a potentially fatal disease you can catch if you stick your X, Y or Z in my A, B or C." Even worse, most people don't know what hep is, so you have to interrupt the passion of the moment with a Public Health 101 lecture. And most potential sex partners aren't thrilled to hear that getting hep B is much easier than getting HIV. The hardest part is deciding when to tell them. Sex is about crossing boundaries by letting go, which makes it difficult to maintain enough control to prevent something unsafe from happening.

But I have to. There is a psychological component with any sexual situation -- or any health situation for that matter. You have to approach your health and your sexuality knowing who you want to be: are you going to be passively controlled by it, or are you going to take charge and be better for it. For me taking charge means being honest with all sexual partners, even if it scares them away.

It's a hassle negotiating the sex, and it's inconvenient not drinking, but the one, true terror is knowing that no matter how much you work out, no matter how good your tan looks, no matter how much money you're making, there is still a deadly disease eating away inside of you. Granted, it's not HIV. And though I curse getting hep B, it was a wake-up call for me to take responsibility for my health and my sexual activity; my remaining HIV negative owes a lot to my experience with hep B.

Bottom line: anyone reading this article should get vaccinated for hep B (and hep A for that matter; there is a new vaccine which works for both hep A and hep B called TwinRX). No matter how insulated you feel from hepatitis, it can get you, especially if you are sexually active (even with the same partner). The Centers for Disease Control recommends all children get vaccinated which shows how general the risk of infection is. If I could trade all of the hassle, the expense, the physical and emotional pain and the time wasted on hep B for a couple of trips to the doctor to get vaccinate, I would gladly do it.

I can't. But you should!