My Turn: Living With Hepatitis C

On Aug. 14, 2001, I went with a friend to a clinic for my annual HIV test. After my blood was drawn, I met with Jose, a counselor at the clinic. He explained that I was being tested for the antibodies present for HIV and also for hepatitis C. Jose reviewed HIV transmission and then discussed how hepatitis C is spread. He spoke about blood-to-blood contact, transfusions, tattoos, and needles. And although I had encountered some of those situations during my wild days, there was obviously no need to listen because I hadn't done anything remotely classified as high-risk for nearly a decade and I didn't feel sick. Instead I admired the abdominal muscles of the men on the HIV posters while he talked.

A week later, I got a call from the clinic. The nurse informed me that I didn't have HIV but that I did test positive for hepatitis C. I flashed back to the conversation with Jose; although I had paid attention to very little of it, I did manage to pick up the idea that this was a serious disease. (After flashing back over my life, I also realized I probably acquired hepatitis C from a dodgy tattoo of a Matisse print I received when I was 23.)

"Do you have any questions?" asked the nurse.

I was speechless.

Immobilized by shock, I sat in my chair until I was able to move to a computer and look up hepatitis C on the Internet. Four million Americans are infected with hepatitis C, and approximately 10,000 people die annually from the disease, which attacks the liver and is transmitted via blood-to-blood contact. In 2001 my treatment options included 48 weeks of a combination of interferon and ribavirin. Ribavirin is an antiviral drug, and interferon is commonly used to treat melanoma and is described as a "chemo-light" drug. (Treatment options have since increased: for instance, one option is a protease inhibitor used in conjunction with ribavirin and interferon, which involves a shorter treatment period.)

In October, I finally went to a doctor. At my first appointment, I learned two things. First, there were far worse diseases that I could have. My doctor then suggested that I refrain from telling people what I had because of the social stigma attached to hepatitis C as well as the general lack of public knowledge about the disease. He told me that I would have to curb my drinking, as my liver would now react to one drink as if it were three. He also said that in terms of transmission, unless I had an open, bleeding wound on my hand and shook someone else's open, bleeding hand, I wasn't going to give hep C to anyone else (assuming I also refrained from the risk factors Jose had mentioned at my first visit, of course).

Despite my doctor's warnings, I told pretty much anyone that I came into contact with about my health condition because it was all that I thought about. What I found was that some people had no reaction, as if I had just shared that I had a hangnail or a bad haircut, while other people, mostly those in the medical profession, looked at me with horror and sadness as if I had just been selected to be stoned to death or torn apart by a pack of wild dogs the following day.

Two years after my diagnosis, I began treatment due to an increase in my viral load—because the treatment is so difficult, doctors recommend waiting until the illness progresses, measured, in part, by an increased viral load. The side effects of both drugs rendered the next 48 weeks an absolute hell. I lived with mood swings, irritability, irrational thoughts, and brain fog, along with rapid weight loss (the one really good side effect), unrelenting rashes on my hands and feet that made sleeping difficult, hypothyroidism, hair loss, and a host of other bizarre and equally annoying symptoms. I became prone to crying fits both in public and private. I cried everywhere: at work, at Starbucks, while getting a manicure, at parties, and very commonly at the doctor's office. This was a side effect of the treatment, but also an indicator of the frustration and fear associated with both the treatment and my illness. However, the clear winner for the worst side effect goes to the grand mal seizures, which resulted in one shoulder dislocation and the loss of my driver's license for six months. Not being able to drive in Houston is like not being able to walk in New York City. At 33, I was a physical and emotional wreck whose only mode of transportation was a used bicycle.

And then something unexpected happened. Each side effect renewed my determination to stick with the treatment. As far as I was concerned, they were going to have to pry my weekly injection from my cold dead hands before I would quit, no matter how bad things got. In addition, having a disease gave me a sense of purpose, something I hadn't possessed since I was a teenager and determined to become the coolest juvenile delinquent in all of Washington, D.C. My new sense of purpose involved beating hepatitis C and helping others do the same.

Thanks to the treatment, I ended up with a nondetectable viral load, the closest thing to a cure one can hope for, although one is never really cured of hep C. And my experience with hepatitis has steered me toward an interest in public health: while still living in Texas, where I was diagnosed, I volunteered at the American Liver Foundation and started a hep C support group. In 2004 I was accepted to graduate school at the Columbia University School of Public Health, where I received my master's degree,. The tears, it turned out, were well worth it.