A post in a forum gave me pause to think this week. The poster said they were feeling really anxious and they felt they might lose some significant part of themselves when they start treatment.

It made me think: what do we give up with Hepatitis C, what do we lose, and what remains at the end?

I thought of the things it was relatively easy to give up. I’d already stopped smoking 30 years ago, so that was a big tick. I knew drinking would kill me, so I gave it up too. Amazing how strong a motivator death can be. Interestingly, alcohol was really the only thing I gave up as a result of my Hepatitis C.

Then I thought of the things I’d lost. I’d lost my health. I’d lost control over my body - it was being ravaged from within by something I couldn’t stop. I’d lost the independence that comes with being healthy. All of a sudden I was tied to schedules. Blood tests every six months. An ultrasound every six months. Doctor’s appointments and consultations with specialists on an ongoing basis. Pills for this and that.

I know of people who have lost their jobs, their friends and sometimes their families because of this illness. What must it be like to lose so much over something you perhaps can’t get rid of, no matter how hard you try?

I’d lost my sense of who I was before the virus. It’s lived with me, in me, for 26 years. It’s one of the most important ways I see myself. I look at myself, I see Hep C.

I felt in many ways that I’d lost my future. I couldn’t plan too far ahead. I couldn’t allow myself to think “in 10 years time ... in 20 years time ... ” because what if I didn’t have that time? I spent a lot of time living in the moment. Not foolishly or dangerously, just because I had trouble imagining a future.  

So what remains when you lose so much?

For me, one of the things that remains is the constancy of my friends and family. My cheer squad. They sit with me when I have to have a scan. They wait for blood test results with me. They call and see how I’m going. They let me know if I’m looking tired and tell me, very kindly and compassionately that it might be time for a rest. They surround me with love.

The effort to get better remains, too. While you mightn’t spend time thinking about the future, you sure spend a lot of time trying to get yourself healthy enough to reach it. Sometimes when we start treatment we are the healthiest we’ve been in a long time. Because what remains from that is the knowledge that you have control over this one tiny aspect of your life, so you grasp it and hold on like a drowning man.

The big question for those who have cleared the virus through treatment is this: how do you define yourself once you’ve lost the imposed defining characteristic that you’ve had for so long?

What are you, if you are no longer a Hep C patient?

Who will you be? Who can you be?

What remains for you?

"Tell me, what is it you plan to do with your one wild and precious life?"
- Mary Oliver, The Summer Day