Guest Voice: Learning how to live, love, and show up with hemophilia

Parenthood is full of surprises. Some are delightful, some are exhausting, and some are completely unpredictable. Add hemophilia to the mix, and everything becomes a little more complicated.

Over the years, I’ve learned that balancing relationships, parenting, and a chronic condition is not about perfection. It is about understanding yourself, being honest, and letting your illness be a part of your life, rather than the whole story.

I deeply value transparency and honesty with my partner, friends, and child. Without that, it’s difficult to set realistic expectations that respect both my boundaries and theirs. Failure to communicate my limits may lead people to assume I can do more than I safely can; or they may even assume that I’m simply unreliable.

Knowing your body means taking responsibility for it. Admitting limitations is never a sign of weakness. On the contrary, it’s a powerful expression of self-respect and respect for your companions.

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Hemophilia does not have to be a barrier in parenting. It can actually be an advantage. This unique condition gives me perspectives and values that many parents don’t have. It gives me an avenue to teach my daughter the value of empathy, patience, and resilience that goes beyond simple words or lectures.

To inject a little humor in our daily lives, my daughter calls me her “bleedy boy.” That little nickname turns what is usually a heavy, medical topic into something light and normal. Though it may sound silly, it teaches both of us to face challenges with humor, honesty, compassion, and lightness.

Bleeds happen, and life doesn’t stop when they do. It doesn’t mean we have to remove ourselves from our children’s lives or our relationships. We can always find new ways to participate, even if it looks different from what we imagined. Hemophilia can be a companion, not a curse. In the process, we gain valuable flexibility and mindfulness that make us more connected with both our body and those around us.

Though it’s important to be an active participant in the world, we still shouldn’t force ourselves when we simply cannot. It’s OK to take a break. Saying “no” isn’t selfish; it can be necessary to stay healthy and present. True friends, supportive partners, and family will understand. The key is sharing our reality with them.

Friendships and relationships help us stay connected. They support our independence from hemophilia, our caregivers, and even the medical world that can take over life.

Chronic illness makes life more interesting in both good and challenging ways. It teaches patience, creativity, and resilience. It provides opportunities to model coping skills, empathy, and emotional intelligence to our kids. It forces us to confront limits without letting them define us.

Our worth is not measured by what we can do, but by how present and engaged we are in the life we live.

Balancing relationships and parenting with hemophilia is not a formula. It’s a constant game of trial and error. It’s also a journey of honesty, self-respect, and connection. By embracing your limits, sharing your reality, and finding humor along the way, you teach your child something precious. You give them the insight and courage to live life fully and face it with creativity, empathy, and authenticity.

Hemophilia will always be a part of my life, but it doesn’t define it. When love, play, teaching, laughing, and guiding are central to parenting and relationships, a happy, well-nurtured family is born.

By showing up, even imperfectly, I hope I can model resilience, compassion, and happiness to my daughter. And even when I’m bleeding, I want her to know that I’m still there to give hugs and share precious laughter.

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