Getting diagnosed with hepatitis C can be pretty dramatic, to say the least.
Life became ugly and frightening. I felt trapped, like my body was broken. Back then, it seemed like a death sentence. Outwardly, I put on a bold front. Deep inside, all I wanted was a second chance.
That was eight years ago. It’s hard to prepare for a hep C diagnosis. (Are we ever really prepared?) But looking back at that scary night in the ER and everything that’s happened since, there are a few things I would have liked to know as I set out on this journey.
I wish I’d known how strong I was
At first, I couldn’t see the big picture. I was too busy trying to understand hep C and liver disease. I spent so many sleepless nights trawling the internet for information, only to have my hopes smashed by the seemingly grim medical details of this disease. I was aching, yellow, and half-starved. Brain fog made it hard for me to think. My failing liver was hurting all of my organs.
I was anxious about everything. Had I chosen the right doctor? Would I be able to pay my medical bills even though I couldn’t work full time? My family didn’t know any more about hep C than I did. My friends were busy with lives of their own. I didn’t want to die, but I didn’t know how to live. If I was going to make it, I had to get a handle on my emotions.
I had no idea how to react. At times, I was cowering and indecisive. I could find my way back to feeling confident, but it was a slow-going process. I have to confess: Many days I faked courage just to keep going. I think it worked, because my will to live grew with every step in the right direction.
Fate swayed me toward a good medical clinic. The staff became my health partners; they braced themselves as I fired questions at them. I listened to their advice and made it my mission to learn all I could about hep C. I took my medications like clockwork and began eating a low-sodium diet. I pampered my liver.
I wish I had known that I could count on life to unfold for me
I hadn’t planned on hepatitis C. Before diagnosis, life was fine. Afterward, it was going downhill faster than a freight train. I couldn’t remember the last time I felt good. Fatigue and body aches threatened to take away my hope of ever getting better — and beyond that, I was struggling with a severe sense of self-doubt. As I leaned toward getting on treatment, my focus shifted toward the future. I was begging for another day, month, year.
The rules changed radically. I had always done things my way. Suddenly, doctors and nurses told me what to do. They scheduled time for medications and also for endless tests. It didn’t always go well for me — giving up control is hard. Finally, the truth sank in: My life was going to be a lot different from now on.
Once I accepted that, it was easier to move toward a new normal.
I made a plan with my doctors. First, I had to get healthy. Later, I could treat the virus. I was sure that eating healthy would help me gain strength, and I was confident that medications could help repair the damage that had been done. Most of all, I learned to trust life, myself, and my doctors to help me heal my liver.
I wish I had known to trust people
After the diagnosis, I came to understand that no one really knows what you are going through. It’s not that they don’t care — most people have good intentions. But with hep C, the symptoms were silent and nearly invisible. I didn’t look sick, so everyone encouraged me to keep going on like normal. They didn’t realize how much I was actually suffering.
The people in my life didn’t always know how to react to my illness. Some friends and family members weren’t sure how to help me when I was sick, and at times, the virus and my treatment were an inconvenience to them. But while a few people drifted away, others showed up. I discovered that certain friends would stick by me during the hard times.
I found support when it was needed, and most importantly I learned how to ask for help.
Talking with my doctors honestly about my fears set the pace for all of my conversations with my community and helped me become a better communicator. When it came time to talk with my family, I let them process their feelings. My illness was a hardship on everyone, including me. We talked it out together.
Eight years have passed since my diagnosis, and today I am living hepatitis C free. The things that could have killed me — liver damage, bleeding varices, ascites, liver cancer — have not. The young woman whose liver failed on a hot August night was terrified. I wish I could go back and hold her hand. I would tell her what a bright future she would have. I would tell her that she has everything inside of her to get through this difficult time. Most of all, I would tell her to trust in her own strength, actively work with her care team, and allow the plan to beat hepatitis C to unfold.
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