How Much Should I Share with My Kids about My Hep C?
Last updated: September 2019
"How much should I share with my kids about hepatitis C?" I get asked this question frequently. Mothers and fathers fighting hepatitis C come to me, concerned if they should disclose this information to their kids or not.
My childhood challenges
I grew up with a mother in and out of hospital, fighting rejections of her transplanted kidney. There were would be weeks - sometimes longer - that she would be absent and admitted to hospital. My life growing up was not that of a normal child. I hated the fact that I could kiss my mother goodbye as she dropped me off to school and then being picked up by a stranger saying my dad and mom were at the hospital. No information was ever given to me. Now let me say this... we all were kids once, and we were not stupid.
Being in the hospital was not a "club med vacation" that my parents would try to portray to me. It was serious stuff. It angers me still to this day thinking of this. In my grade school years, I suffered anxiety and I would make every excuse to my teacher to get out and go to the office to call my mom just to hear her voice. I was worried she was going to die while I was at school. I believe I developed separation anxiety because of the false information given to me on her health.
Looking back on my mom's fight
Back when I was born, my mom was the first woman in the United States to give birth after a kidney transplant. Both of us were featured in Good Housekeeping magazine. I grew up with my mother cutting the pictures out of this magazine and placing in my baby book; It was not until I ventured off to college that I looked up this magazine article and got to read it. It brought me to tears. My senior year of high school was grueling for me and my mom.... We fought heavily. Back then, I felt like she was constantly "in my space". It was not untik I read this Good Housekeeping article that I realized what had happened... She just wanted to live long enough to see me graduate high school. So, looking back now, I see that all she was doing during my senior year was panicking that she only had so much time to give me all these life lessons to learn. She was running out of time... so she thought then.
After reading this, I had a different outlook towards my mom. I understood her fear and all she was trying to do. It did not help however that she hid this from me all those years; She suffered in silence with her health, trying to do what she thought was protecting me.
How my childhood shaped my own parenting style
My mom's experience is why that when I was diagnosed with hep C, and my children witnessed their grandma pass away from it, I knew I had to be an open book to them about my health. I did not want them be fearful or anxious. We sat down and I laid out the facts about my liver disease. I talked about the 50/50 chance of success with the treatments available back then.
Facing hepatitis C, as a family
When my first treatment didn't work, I sat them down again, and as a family, we discussed options. No matter what, I told them we stay positive and that I would do all I can to fight this and beat it. It was 2 years later and numerous trial attempts that I finally got on a trial that I cured my hepatitis C. Both my kids went to every doctor visit and were there for every procedure I had done.
It was a family victory when I got the news that I was cured of hepatitis C. My kids know more about hepatitis than most doctors; They were my biggest cheerleaders. We cried together through it, we laughed together through it. Together, WE won the fight. I suggest being honest with your kids. You do not need to give every detail, but be honest with them. They are smarter than you think... Trust me.