Life As A Child with Hepatitis C
Being a kid is rough (emphasis on the UGH). Being a kid with hep C, though, is just weird. When I was diagnosed with HCV at 12, in 1999, I learned the transmission vectors, the rate of progression, the litany of potential symptoms and that there was no cure. When parents found out, the first response was fear, or with most of my friends’ parents, concern. The only time my status with hepatitis C was responded with indifference was by my peers.
Hepatitis C and my peers
At 12, most kids didn’t understand enough to care, even after I explained it. But this would change as I entered highschool, largely because of sex. Because at 14, suddenly sex is THE topic. It was also unfortunate timing for me, as when I turned 14, Pamela Anderson revealed she had acquired hep C from sharing a tattoo needle.
So, overnight, hep C was now thought of as an STD. It was the only fact my peers now knew about Hep C. So, when teachers, parents, and student peers would learn of my status, somehow, the things I’d easily learned when I was 12 were incomprehensible to parents in their 30s/40s, because suddenly, fear became the predominant response.
My experiences as a kid with hep C
In an effort to avoid problems with the school, I was removed and barred from all PE classes and sports teams. I wish that this could have been different, but based on how teachers reacted to just my coughing, I’m glad we did it this way.
There was a treatment – pegalyted interferon- which came out while I was in high school. After watching my mom take it and having it fail, I was conflicted, but determined to try.
But, I had to wait. I had to wait until I was 18. To be honest, I’m glad that I did; I’m glad that I did the treatments when I did. But A LOT has changed since 1999, or even since 2004 (when I finally turned 18).
How to help children with hep C
So, let’s talk about pediatric hep C today, how can you help a kid (maybe your kid?) with hep C? Good news, things have changed!!
For reference, not only did I have hep C as a kid, I also worked with kids for over ten years (working at, then running, and then consulting for child care facilities). Those jobs required a handful of child development and development psychology courses. Prior to becoming a hep C advocate, I advocated for children and afterschool programs.
First off, because more people know a little bit about hep C, allies are easier to find. FIND AN ALLY at the kid’s school! This is imperative simply because stigma is huge, and it doesn’t give a hoot if you’re 40 or 15 (it’s just as harder to see when someone is younger).
Second, there are treatments now!!!!! The FDA recently approved another hep C treatment for pediatric hep C patients.
Kids with hep C can take the treatment over the summer; In my experience, in case there are side effects, summer is better (less school to miss, less explanation needed to peers/parents, etc).
Third, TALK ABOUT IT WITH THEM.
Hep C is weird, and it can have weird effects. Sometimes, the notion of having it can have a profound or traumatic effect on a child, let alone if the child experiences symptoms. (From experience, I can tell you that it’s really weird to pee a different color the first time.)
You don’t need to provide direction on what they should do, let them explore their feelings about this, let them explain how it makes them feel, then open yourself to the conversation. Talk about how you feel about it. It’s important to let them go first, or they’re likely to echo your points. If a child feels reluctant, ask them to write it down. They don’t need to share this with anyone unless they feel like it. (Just so we’re clear, you can do this with adults too, because that;s essentially what children are- tiny underinformed adults.)
Helping younger kids
For younger kids (let’s say kids under 9), don’t do this. Feelings are complicated to explain, and let’s be real, a 9-year-old lacks the vocabulary to get there. If you have an Einstein, cool. But draw, because Einstein didn’t understand feelings either.
For ages 5-9, ask them to draw. Ask them to draw themselves, their family, their favorite things to do. Then, ask them how those things change with treatment. Most kids probably won’t draw much differently , but it will help them understand and cope with the experience.
Under the age of four, most kids don’t have the capacity to grasp hep C. Explain everything and remain as calm as you can while doing so, express emotion, but remember that this moment will have a lasting impact, even if they don’t remember it.
Talking about hep C can help kids understand it.
My mom and I always had a hard time talking about hep C, but that’s because she felt enormous guilt about it. And, I had trouble looking into what I saw as my own future.
But, good news: the future is bright now, thanks to these amazing innovations, resources available to educate, and allies all around us in support communities.
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