When my doctor said, "You have hepatitis C," it felt as if I had been propelled onto another planet. It was a desolate place with no landmarks.
I told my husband about the diagnosis, but no one else. Two days later a friend visited my home. Sitting on the beach with her, talking about her teaching project and about the best ways to moor a boat, I gave her less than half my attention. The rest of my mind tumbled in outer space. I thought about my disease all the time.
I would think self-defeating thoughts while listening to friends chatting about housing prices or their new Sheltie puppy. I struggled to maintain a semblance that I was paying attention without giving my secret away. Yet I yearned to have a sounding board that didn't involve my family, who worried too much about me already. I took the ferry to North Vancouver twice a week for work and couldn't avoid talking with colleagues. In the work setting I felt even more reticent. I worried that if I revealed my infection to workmates, they would think I was strange, dirty, or ultra-contagious. They might inadvertently send gossip up the administrative chain. The higher-ups might think I was contagious too. After all, before I learned I had hep, I had hardly known anything about the disease. In the past I too would have thought it was easily transmissible.
My apprehension turned out to be true—with a few people among many. Two of my friends seemed to avoid me once they heard of my illness. They became just occasional acquaintances. I lost communication with a family member. And I believe I lost one person's friendship entirely when I talked with her about my disease.
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I had lunch with Ellen less than three weeks post-diagnosis. Ellen and I had worked together as volunteers in a writers' organization more than twenty years before and had managed an event together. We had remained fast but occasional friends. Ellen would nudge me four or five times a year, and we'd meet in a restaurant or pub. Once or twice a year we'd see a movie together.
I had set up the lunch with her three weeks earlier, a day or two before my diagnosis. We sat across from each other at the Vancouver Art Gallery's outdoor café, which overlooks touristy Robson Square.
As we ate, Ellen expounded on her coming trek in Spain, yet I heard her with just about a fifth of my brain. The other fourfths was fixated on my impending misery. My mind was running a loop, twirling through the choice of dying from liver disease or spending a year running back and forth to the bathroom, throwing up. I also kept trying to think of a way to tell Ellen I had hep.
"My mom's been ill," she said, as she cut into the cheese-filled quesadilla on her plate.
"Oh no. That's too bad. What's wrong?" I asked, thinking whatever illness her mother had was probably not as bad as hepatitis C. I thought I could squeeze in a mention of my disease and finally let it out in the open, at least with this one friend.
"A stroke. But she's recovering," she said.
A stroke is serious, I thought, and it's more likely to kill you than hepatitis C. But her mother was recovering. "It's good that she's getting better," I said. Ellen talked about her mother's situation, and I asked questions about it.
As we finished our lunches and each ordered pie à la mode, the conversation segued into the usefulness of living close to downtown, the good fortune of living near a hospital, Ellen's recent visit to the hospital for a pelvic ultrasound, and, finally, the recent ultrasound of my liver. Once the pies arrived and the server had left the table, I threw in, "I just learned I have hepatitis C."
"Oh. Oh, really?" Ellen said.
I told her about my blood transfusion and how I had acquired a new doctor who had discovered the hep. Ellen stared directly at her apple pie as I talked, not once looking up. She pushed around pieces of crust with her fork, mushing them into the ice cream. then she pushed the half-eaten pie away. She moved her chair back from the table and looked at me, just a bit. "I've got to get back to work. We should get the check," she said.
We paid. We left the restaurant. "Gotta go," she said, avoiding our usual hug. Two days later I emailed Ellen saying lunch had been fun, and it was too bad she didn't have more time off from work. I invited her to my home. Even though Ellen used to email or call me once a month or so, I never heard back—even after I emailed her again, twice. I surmised she was afraid of catching hep.
I talked about people's fear of contagion with Bill Demish, an air traffic controller who was injured in a hockey game. He asked me, "Did you notice that when people found out you had hep C, there was a bit of treating you like a leper?"
"Yes, I noticed," I said. I thought about Ellen's body language as she picked at the pie. I asked Bill what he does when the stigma rears up at him. He explained his philosophy with an example.
One day, he said, he was in Grande Prairie, Alberta, having coffee with a friend. He told his friend about his hep. After Bill went home, his wife said his friend had called and asked, "Gee. Should I be worried about this?"
Bill said his friend may have been worrying whether he might have caught hep from Bill in the coffee shop, but more likely he was thinking back to all of his interactions with Bill, not knowing if the hepatitis virus could jump from person to person in a handshake or be sprinkled into the air with a sneeze.
"I definitely felt some of my friends kind of back away," Bill told me. "A lot of people thought hep was about the same as aids, and there was more stigma with aids than there should have been." Bill said it wasn't worth worrying much about the stigma. When people hear you have hep, they eventually get used to it, he said.
But before they do, awkward and disheartening moments can arise. John Lavette, a retired flower merchant, said when he first tells friends about his infection, he almost hears them thinking, "Get away from me. I don't want it. You're going to give me something shitty." He doesn't blame these people, he said. They may just be ignorant. But when he explains his disease to a person a second time, sometimes "they're still freaky about it, and they try to avoid you." That's not fair, he says. He didn't ask for his disease.
Neither did I. Neither did anyone.
The above is an excerpt from Demon in My Blood: My Fight with Hep C—and a Miracle Cure(Greystone Books, May 16) by Elizabeth Rains.