Looking back at a traumatic childhood with undiagnosed hemophilia

When I was in the fifth grade, I’d look in the mirror every morning and hate who I saw. I believed I was ugly, unpopular, and weird, and the hand-me-down clothes I wore made me look different. I’d say horrible things to myself, like, “You really are a dog.” I wasn’t good at sports, was picked last for every team, and had few friends. Even the kind ones hung out with me only in private, to avoid damaging their reputation. I felt very alone. I had no idea yet that my body was part of the reason why.

I fully integrated every negative message from my peers into my own self-perception. I truly loathed my 11-year-old self. I can’t say for certain how much having undiagnosed hemophilia contributed to the relentless bullying. It was one piece of a much larger picture, but it mattered.

Another major piece of that picture was our financial reality. I grew up poor in an upper-middle-class neighborhood. We stood out in those same old clothes and couldn’t afford the extracurriculars our peers took for granted. I showered once a week and often wore dirty clothes. I must’ve stunk, though no one told me that directly.

Recommended Reading

Oct. 22, 2025 Columns by Cazandra Campos-MacDonald

Respecting our physical limitations, even when they’re frustrating

Kids would bark and howl at me as they passed. In fifth grade, I got word that a group had planned to put dog food in my Valentine’s Day box instead of cards and candy. I sobbed and told a trusted adult. She informed me that crying only egged the bullies on, so I didn’t cry again for over a decade. I learned early to carry pain alone.

And there was so much pain. I desperately wanted to fit in, but I couldn’t keep up with playground games or gym class. Every time I ran, my ankles would swell. They always hurt. I thought I was weak, but the reality was that I had no idea it was hemophilia. I blamed myself for something that simply wasn’t my fault.

When I transitioned to middle school, the bullying continued. I was once picked up and dumped into a trash can. People who didn’t even know me “hated” me. Those who hurt me the most often knew the least about me. I am grateful that school officials today are more aware about bullying than they were 40 years ago. I would hope that such incidents would not be tolerated today.

In seventh grade, I convinced my doctor to excuse me from the last quarter of gym class. It was the only pain-free stretch I had in middle school. The following year, when I asked again, I was told my only option was adaptive physical education (PE). I was sent to visit the class as a warning. The students there had significant physical challenges. All were in wheelchairs or on crutches, and some struggled to communicate. It was a terrible way to pressure a struggling child into enduring pain. When the tactic worked and I stayed silent, I lost something. I lost the chance to belong somewhere, with students who might have understood isolation as well as I did.

Today, students with hemophilia in the U.S. often have 504 plans that accommodate their needs. These plans specify which activities are safe and allow inclusion in general PE with adaptations. What a difference that would have made for me — not just physically, but also in the message it would have sent: You belong here.

From bullying to belonging

Hemophilia and physical limitations made me stand out. My family’s financial reality made it worse. A childhood of chronic pain made me a different kind of kid. I cared more about feelings and philosophical conversations than heartthrobs or the latest movies. The other children simply couldn’t relate. While the bullying was inexcusable, I was an easy target. And I was alone with all of it.

Today, I don’t want any young person with hemophilia to have to carry that kind of loneliness and isolation. Inclusion matters. It means focusing on what a child can do rather than what they can’t. It means protecting their self-esteem and ensuring their classmates treat them with kindness. No child should internalize their diagnosis or physical capabilities as a reason to be ashamed.

One of the most healing experiences of my life was finding the hemophilia community. For the first time, I didn’t feel alone. Rather, I felt understood. What they taught me empowered me to finally get a proper diagnosis and the appropriate treatment. Today, I am in less pain than I was in elementary school. I have genuine friends who get it. I feel incredibly blessed.

I’m so glad that the bullies no longer dictate how I see myself. I’ve finally found a community that tells me the truth: I am a woman with hemophilia, I am valued, and I belong.

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, and are intended to spark discussion about issues pertaining to hemophilia.