Why Pride Month makes me think about my hemophilia family
People deserve the freedom to become fully themselves
Written by |
Every June, my social media feeds fill with rainbows. My LGBTQ+ friends celebrate Pride Month, while others share deeply personal stories about identity, belonging, and acceptance. Some are hopeful, some heartbreaking, and most carry a bit of both. Every year, I read those stories and find myself thinking about my own daughter.
As parents, we start imagining our children’s futures long before they can imagine them for themselves. We picture the hobbies they’ll love, the careers they’ll pursue, and the kind of adults they’ll become. Sometimes we even imagine the people they’ll one day fall in love with.
But living in a family shaped by hemophilia has taught me that the people we love are never ours to define.
The first label isn’t the whole story
One of the first things I learned about my husband was that he had severe hemophilia B. People around me often acted as though that single fact should outweigh everything else — his humor, his stubbornness, his kindness, his love of the water, the way he lights up when he talks about something he cares about. But while hemophilia has shaped parts of our life together, it has never been the most interesting thing about him. The diagnosis is part of him, but it isn’t all of him.
I’ve spent years writing about the importance of seeing the person beyond the condition. I’ve written about avoiding the urge to define people by their medical charts or to let fear become the loudest voice in a family’s story. I’ve always firmly believed that people are never just patients, caregivers, or diagnoses. And they’re certainly not just the first label the world learns about them. I think people in the rare disease community understand that better than most.
The kind of parent I hope to be
I’m not a member of the LGBTQ+ community, and I don’t pretend to speak for it. But Pride Month reminds me of something I hope my daughter always knows: She doesn’t owe me the version of herself I imagined when she was born.
The truth is, I have no idea who she’ll become. I don’t know what dreams she’ll chase, what passions she’ll discover, what kind of life she’ll build for herself, or who she’ll someday love. And maybe that’s exactly how it’s supposed to be.
Living alongside hemophilia has taught me that life rarely follows the script we write for it. You make plans, and then a bleed happens. You picture one future, and then an accident changes everything. You think you know what life with a chronic condition will look like, only to discover that the person living with it keeps surprising you. My husband certainly surprised me!
Maybe that’s why Pride Month resonates with me. At its heart, it reminds me that people deserve the freedom to become fully themselves instead of the version others expect them to be. As a mom, I hope I can offer my daughter that same freedom. I hope she grows into someone I never could have imagined. I hope she continues to discover parts of herself that surprise both of us. And I hope that, no matter who she becomes, she always knows she doesn’t have to earn the right to be herself.
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 consult your physician or another qualified healthcare 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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.