When I started this blog about hepatitis C, I didn’t plan to write about the stigma associated with the illness. About a year ago, just after my diagnosis, I was scrambling for information on treatment and on the prognosis of my disease, so that’s what I tended to write about. When I told my friends about my infection, most were sympathetic and helpful.
But this morning, a month after I learned I am 100% clear of hepatitis, the stigma hit home, literally. Home as in family. Home as in people you should be able to trust with your tribulations. Home as in a younger sister who might have been more comforting during the brief phone call I had with her this morning. It was brief because I lost it. I hung up on her.
My younger sister and I were talking about my mother, a tiny but spry 98-year-old who weighs 80 pounds and looks like a human, famished Tweety bird. My sister had just moved my mother to temporary lodgings at my nephew’s house, and we were discussing the housing situation. My sister asked me why, when I visited her in Florida, I stayed at my older sister’s house instead of hers.
“Mary has an internet connection, which I need for my work,” I said.
“I have an internet connection.”
“Mary has some nice roads around her house, and I like to go for walks to keep healthy.”
“I have very nice roads around my house where you can walk.”
“Well, I like staying in the room Mary has with the connecting bathroom.”
That’s where our niece stays, my sister declared. “She has hepatitis C, and it sits there for two weeks in bathrooms. It can sit on something for seven to 10 days.”
I had never told my sister that I had hep because I knew she would tell my mother. I didn’t want my mother worrying about me in her fragile old age. But it never occurred to me that anyone in my family would propagate the stigma that is so hurtful to people who have hep. So I spewed out my story. I told my sister I had contracted hepatitis C from a blood transfusion the day after my daughter was born. I told her she was wrong, wrong, wrong. It is impossible to get hep from a toilet set.
Then she claimed she had done her own research and was sure that it could happen.
“I’m writing a book on the topic. I’ve read hundreds of research studies. It’s impossible for that to happen!”
“But, but . . .”
I hung up.
After running this through my brain for several hours, I am cooling down. Hepatitis can hide in your body for decades. Prejudice can hide in your family. But your family will always be your family. We can give them the benefit of the doubt for their ignorance and show them the compassion that everyone deserves. I will probably soon apologize to my sister for hanging up on her.
Thanks for your honesty Elizabeth. And your courage to write this blog.
Thank you. That one did take a little courage.