Someone asked me, “Are things different now that you don’t have hepatitis C anymore?” I answered with an enthusiastic yes. He then asked, “What is the first thing you noticed after you were cured?” I thought about it for about a second, and then answered, “I don’t have to worry about giving hep C to anyone else.”
When I had hepatitis C, bleeding was accompanied with a sense of panic. Once I had cut myself and didn’t realize it. I saw blood on my hand and had a gut-wrenching reaction - where did I leave my blood? Could I have infected anyone? People without an infectious blood disease would clean it up; I considered calling in a hazardous maintenance team.
Being fettered to hepatitis C is an enormous weight. Some patients describe themselves as “feeling contaminated.” Although now I feel a new freedom, I still treat my blood as a commodity that I don’t want to share with anyone. I assume I am cured for good, but the reality is that I can’t be 100 percent certain that I am not harboring some sort of virus. Also, I don’t want to acquire another infectious disease, so I keep my blood to myself.
I am deeply disturbed by recent insurance companies’ denials of coverage to people whose hepatitis C has not progressed to stage 3 or 4 fibrosis. This is wrong for many reasons, but I never hear insurance companies consider the burden of hepatitis C. I wish they could walk in our shoes and feel the heaviness of living with this virus. It holds you hostage, and even when it doesn’t cause destroy the liver, it does severe psychic damage.
I lived with hepatitis C for more than 25 years, and after about ten years of it, I decided I needed to live as a whole being. Hepatitis C was holding my liver hostage, but I would not let it occupy my soul. This was liberating, and although I thought I was free of the psychological stress, it was not until I was cured that I felt completely free. It is an amazing feeling, and I long for the day that everyone can be free with me.
If you have hepatitis C, may you be cured, may you be free, and may you have complete access to medical care.