From a journalist who has been cured of hepatitis C
I recently celebrated my six-month SVR.
I contracted hepatitis C on Dec. 1, 1972, the day I got home from the hospital after my second daughter was born. I suffered a massive hemorrhage. Luckily, a friend who was an intern had come by to see my new baby. He drove me through a blizzard to the hospital. I received three units of blood. At least one of them contained HCV.
In the 1980s I became a journalist. When I learned of my diagnosis about a year ago, I did what journalists do. I talked to doctors, researchers, and people who have hep, and I read everything I could find in order to learn about hepatitis C (including this website, which is excellent). Luckily, my doctor, my gastroenterologist, and my nurse worked together to fast-track my treatment with simeprevir and sofosbuvir. Now I have a book contract to write about my experience with hepatitis C.
I don’t know the book title yet, but I do know that the book will focus a lot on friendship. Almost all of my friends and family have been incredibly supportive. Sadly, though, I learned from one of my friends and from one of my four sisters that the stigma of hepatitis C still exists.
The friend sat across from me in a coffee shop not long after I was diagnosed. I gathered my courage and told her I had contracted hep C. A pallor washed across her face and she inched away from me in her chair. That told me everything. She used to call me every month, but she never called again after that.
The issue with my sister just occurred. I had never told her about my hep. In a phone call from Florida last week, she announced that my niece has hepatitis C and warned me not to use the same bathroom as her. I could hardly control my anger. I spent a minute explaining that HCV isn’t spread through casual contact.
“But, but, but,” she said.
I hung up on my sister.
Then again, some people became more beautiful and wonderful because of their support and compassion when they learned I had the illness. I’ll be writing about them in my book. It will be published in fall 2016 under my name, Elizabeth Rains. One thing hepatitis C taught me was to say to myself, “to hell with people who don’t understand this disease. I’m not going to hide my name or my feelings.”
Have you been diagnosed with cirrhosis?