Playtime Is Not so Simple with Hemophilia

Our baby girl turned one earlier this year. Watching Cittie mature makes me reflect on the innocent phase of childhood.

Life was so simple back then. I believed games and toys to be major issues of the utmost importance. I stayed late after school and played with my friends. Looking back, I cherish the times I was free of chronic health issues, such as synovitis of the ankle or epilepsy. I could run and play all sorts of games with my friends.

I was a kid — always happy, without a care in the world. But my carefree lifestyle often came with a price. I dreaded feelings of tenderness in my ankle (one of my chronic bleeding areas) because I knew I wouldn’t be OK for a long time.

I often injured myself. If I remember correctly, I bled internally once or twice a month. I refused to admit that I was bleeding, which aggravated my condition. Denying my injuries was no doubt a stupid thing to do, but I was a scared little kid. I feared blood transfusions and dreaded telling my parents that I had a new injury.

Funnily enough, I remember internal bleeds being more painful than transfusions.

My dad often asked me what caused my ankle bleeds. I struggled to tell the truth. I felt embarrassed that I wasn’t responsible enough to be mindful of my body. Scoldings for acting like a kid frightened me.

However, my dad also told me something comforting. He knew that I probably got injured from running around and playing with my friends — which is what kids do.

My childhood was simple, but it also was burdened by hemophilia. I wrestled with the thought that I wasn’t a normal kid. I wanted to have a normal life and play with my friends, but I couldn’t overexert myself.

It’s plausible that denying my ankle injuries as a kid led to my synovitis. But can I blame myself for hiding and aggravating my bleeds? It’s tempting. But you can’t get mad at a kid. They’re doing what they should be at their age — playing, socializing, and exploring.

Maybe I should have been wiser and more responsible. But I wasn’t able to. Being a kid with a chronic illness is difficult. I felt pressured to keep up with my peers. I feared getting left behind and being friendless and struggled with knowing I’d suffer painful consequences for my injuries.

A nagging voice in my head tells me I’m stupid for being an irresponsible child. But as an adult with a 1-year-old and a loving wife, I’d like to tell that young boy that it’s OK. I don’t blame him for being a kid.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.