Getting to Know Bill
You know what HepatitisC.net’s contributors and moderators think about hep C, but there’s more to us than hep C. We’re doing a Getting to Know… series to introduce you to the people behind the names. Our the goal is to help you get to know us a little better. Check out more from one of our newest contributors, Bill Bartlett.
Tell us about your hep C diagnosis. It was some time ago, but I remember it like it was yesterday. I got a call from my physician after he took some routine blood tests. He said there was an anomaly in my blood work that required some follow-up testing.
What went through your mind after receiving your diagnosis? It’s not what went through my mind after receiving the diagnosis that was so terrifying. It was what went through my mind when my physician asked me back for more blood work that was most frightening…before he actually said, “Hepatitis C.” Let me backtrack a little: I had neglected my health for some time, owing to the drug and alcohol abuse that had invited hepatitis into my life. It seems few who ever shared needles get out without a HCV diagnosis. I had not even heard of hepatitis C. I was worried about AIDS. I learned an old friend I knew was dying of AIDS; I’d shared needles with him. So, when the doctor sent me for more blood work, I went straight to, “I’m gonna die.” I decided I could not live with HIV. So, I made a plan: if I were diagnosed with HIV, I would steal my father’s sailboat and sail off the face of the earth.
When the doctor called—despite the fact that I’d been tested for HIV and despite the fact that HIV was not even a thing when I had shared needles—I was certain I was going to hear, “HIV-positive.”
I was panicking. My father’s sailboat was in Annapolis, MD; I was now living in Playa del Rey, CA. I’d have to steal a boat. I made an appointment to get my blood drawn and followed up with the doctor by phone. I remember the call quite clearly. He asked if I had ever had any blood transfusions or shared needles. We know the answer to that one. He said, that I had tested positive for hepatitis C and made a referral to a gastroenterologist for treatment. Treatment? Yes, there was a way out. I still thought I had just received a death sentence, but I no longer felt compelled sail off the face of the planet. There seemed to be some hope. The gastroenterologist further allayed my fears, but I had worked myself into a mental and emotional hysteria and, sadly, never bothered to tell anybody what was going on in my head.
What is one thing you wish people knew about hepatitis C? One of the first things my gastroenterologist said to was this: “Hepatitis C is a disease of decades.” I have since made some friends for whom that was not the case. They struggled through interferon treatments and two friends died. But for somebody whose liver was still relatively healthy, as mine was and is, the decline in liver function can be arrested with some lifestyle changes.
What made you decide to be an advocate? Talking about this stuff, and discussing it openly, seems take some power out of it. Maybe that makes perfect sense. Maybe not. I was so gripped with fear following my diagnosis. I was so ashamed of my past. I have come to believe, however, that my story is my best friend and most powerful advocate. It was my fear and shame that gave hepatitis C power. Hepatitis C, itself, is just a virus. It is not who I am. What I did to get hepatitis C is not who I am.
So, I think my motives are selfish—I need to get this out, to exorcise the demon, to let go of my old ideas about me. Let go of ‘junkie.’ The image I had of myself was colored by hepatitis C…moreover by the sense of shame I felt for having contracted it in the first place. I made a mistake…OK, I made a LOT of mistakes, but I am not a mistake. If others feel some of the shame I felt, I want them to know there is hope. Hope for living with hepatitis C, hope for treatment, and, most importantly, hope for rising above.
What is one piece of advice you would give to those struggling with hepatitis C? Develop a dialogue or a language that makes it comfortable to talk about hepatitis C. For me, that meant connecting with people who also had it and were talking about it. One dear friend was taking interferon for three years without much success. He was really suffering from the treatment. He was a great advocate for me. He was honest. He said, “It sucks.” But he was not owned by the illness…or by the treatment. Treatment options are much better now than they were 15 years ago. But I still think treatment is a very personal decision. My friend required treatment. I have a relatively healthy liver, owing most to the fact that I got sober not long after I contracted hepatitis. So, I am relatively healthy and have elected not to take treatment.
Who/what inspires you? I love seeing people grow and evolve and shed their burdens…in seeing anything is possible. For example, I have a friend who is a great hepatitis C treatment advocate to me. She regularly asks what I am doing about my hepatitis C and keeping me posted on the new treatment options. She took the interferon treatment and is hep-C free. She inspires me.
What scares you? I work as a chaplain in a hospital. I get scared when I see patients with jaundice.
Describe your support system. My wife, Mary, is the heart of my life and love. We have a wide circle of friends and family, too. Among them, I have a group of guys with whom I stay current and accountable. If I were President of the United States, they would be my cabinet. They know nothing about economics or world affairs, but I trust them. They are my best friends.
Check out part 2 of our interview with Bill.