Walking the line between care and control for people with hemophilia

Last updated July 25, 2025, by Allyx Formalejo

My husband, Jared, was nearly 30 when someone looked at the scissors in his hand and said, “You shouldn’t be holding those. What if you have a seizure?”

He was in the middle of a task, not doing anything risky or dramatic. The scissors were a tool, nothing more. But that single comment hit harder than expected. Not because it was cruel, but because it was limiting.

In that moment, Jared felt small. Not like a man with a couple of chronic illnesses, but like someone incapable of making his own decisions, or even managing his own hands. He felt the sting of frustration and embarrassment, that all-too-familiar ache of being underestimated.

Since then, Jared’s taken that space back. These days, he uses tools like hammers and screwdrivers to make repairs around the house, which brings him a quiet sense of joy and competence. He stays mindful of his hemophilia and seizures, pacing himself and choosing projects carefully.

But he doesn’t avoid what he loves. He approaches them with equal amounts of confidence and care. And in these moments, I’m reminded: Unclipped wings start with trusting they can fly.

When care becomes control

If you’re a caregiver — spouse, parent, sibling, or friend — you’ve probably at some point stepped in too quickly. Chimed in too loudly. Decided on someone else’s behalf because it felt safer that way.

I’ve done it, too.

Infantilization is treating someone as less capable than they truly are or assuming they need help before they’ve asked for it. And it doesn’t always come from a bad place.

Often, it’s rooted in love, the anxious, protective kind that tries to minimize harm before it happens. But even well-meaning acts can chip away at a person’s sense of dignity.

It might show up as overusing “we” when talking about their care. Speaking for them in front of doctors or peers. Taking over a task they could do themselves.

It erodes autonomy. It sends the message, “I don’t trust you to handle this.”

And when that message is repeated over time, it becomes internalized. The person begins to believe it. They stop asserting needs. They stop trying. And the caregiver, in turn, becomes more overextended, shouldering more responsibility than they need to.

Nobody wins.

Shifting the dynamic

If this hits a nerve, I invite you to pause. My intent is not for you to feel shame but to reflect. Here are a few ways to start untangling the habit of over-helping.

• Invite hard conversations. Ask your loved one: “Have I overstepped? How would you prefer I support you?” Listen without defensiveness. This kind of dialogue can be uncomfortable, but it builds trust.
• Check the root fear. Often, we jump in because we’re afraid. We fear what could go wrong, or what it would say about us if it did. But fear is a poor decision-maker. To avoid being paralyzed by fear, take action. Journal. Reflect. Work with a therapist if you can. The goal is to recognize when fear is guiding your actions, and then gently reroute.
• Pause before you rescue. Your loved one is struggling to self-advocate with a doctor? Pause. Let them try to speak for themselves. A difficult conversation with a friend? Let them take the lead. Be nearby, but resist the urge to fix things immediately. There is no growth without discomfort.
• Ask instead of assume. Simple questions like “Do you want help with that?” or “How would you like me to support you right now?” can go a long way. You might be surprised by the answer — and empowered to share the load more evenly.
• If you’re a parent, plan the handoff. Don’t wait until your child is an adult to talk about independence. Start early. Make a plan together for gradually transferring medical responsibilities, such as infusions, emergency care, and conversations with doctors. Let it be a shared project, not a solo assignment.

Choosing empowerment over control

Avoiding overcontrolling behavior doesn’t mean backing away from caregiving entirely. It means making room for growth. For your loved one to try, including sometimes failing, with your support close by but not looming overhead.

It means seeing them as a full, capable person. Not despite their condition, but alongside it.

Jared has taught me this, again and again. That moment with the scissors wasn’t a turning point. It was just one in a series of realizations.

He’s not defined by what could go wrong. He’s defined by how he shows up, how he chooses to live, and how he insists on carving out freedom in the midst of limitation.

That’s why, when he reaches for a hammer, I don’t rush to stop him. I trust him to know his body. I trust him to ask for help if he needs it. And I trust that when he builds something — whether it’s a piece of furniture or a new way of living — it’s built with care, precision, and a whole lot of heart.

And that’s what love looks like: not control, not overprotection, but a steady hand, ready to support, without clipping the wings of the person you love.

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.