Telling My Messy Hep C Story
Last updated: January 2023
I didn’t plan on telling my messy hep C story to anyone. There were a lot of reasons that it ended up coming out.
Most of it had to do with anger. I was mad at the world after my diagnosis.
Inside my head was a beehive of hateful words. None of them were good.
One day, I wrote down everything I was learning about hep C. At first, it made me feel worse to see it on paper, but then it slowly made me stronger.
Lying in my bed, newly divorced, and waiting to start hep C treatment was lonely. After finding an online group also looking for treatment, I made up a username and started reading all the posts.
Soon, I stay logged in on my phone. I read for hours about others with hep C to see how they felt.
They were mad too. I wasn’t alone anymore.
Feeling heard by others
I started chatting with other people. Nobody judged me for not knowing anything about hep C. My stories were a lot like theirs.
We discussed how we got hep C, how soon we could start treatment, and just about everything else under the sun. Also, my sadness and anger were now shared. Our livers were failing, and we could not get help fast enough.
The chat space felt like a safe spot for me to tell the truth about how I felt. Before treatment, I was tired and sick. I felt a little better during treatment but still needed a lot of rest.
Online, my words were heard, plus I could also help others. As time went on, some of my answers became longer. I had more experience. New people would join our group, and I wanted to help them feel welcome.
After I was cured, my boyfriend and I were married. He saw the box of notebooks and journals filled with my stories and recipes to help my liver heal.
He opened up a website for me, and I started filling up the pages. I had been very sick. My writing was a mess, but I kept going.
Within weeks, hundreds of people logged in daily. With newer cures for hep C coming out, people wanted to hear a success story. I had slowly become a patient advocate.
Sharing my story
It’s been over ten years since I began telling my story of hep C. At first, I was just another person who wanted to be cured.
There were so many problems along the way. As I became healthier after the cure, my storytelling moved to other blogs.
Then, I linked with other patient groups to encourage people to get help. Soon, I worked with doctors and other groups to help people like me.
Most of us have a messy story about hep C. You can also tell your story and help others.
If you are like me, it will help you overcome all of the fear, anxiety, and anger of living with hep C.
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