Self-infusions bring both freedom and fear for my husband with hemophilia
The treatment that gave Jared freedom also became something he feared
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Sometimes, when my husband, Jared, self-infuses, I can tell when something has shifted.
He has severe hemophilia B and has been self-infusing for years. He knows the process. He knows his veins. He knows how to prepare his factor and what needs to happen next. But if he misses a vein or an infusion becomes more difficult than expected, his emotions can change quickly. Sometimes there is tension. Sometimes anxiety. And sometimes, there is rage.
That intensity can be unsettling, even frightening, to someone who does not understand where it is coming from.
I do not say that to suggest every expression of anger is acceptable. Understanding a feeling is different from excusing what someone might do with it. But I also do not want to sanitize what this part of hemophilia can look like for my husband.
The treatment that gave Jared freedom also became something he feared.
Learning independence didn’t erase the fear
Jared learned to self-infuse relatively late, in his mid-20s. Before that, he spent years depending on others to administer treatment.
Learning the skill gave him much more independence. He didn’t always need another person available to access a vein. As we eventually built a home and life of our own, that ability became especially important.
Self-infusion can represent freedom. But knowing how to do something and feeling safe while doing it are not necessarily the same thing.
Some of Jared’s earliest experiences with treatment happened around adults who carried their own anxiety about infusing him. That anxiety wasn’t necessarily a fear of needles or medicine itself. Someone can understand a medical procedure perfectly well and still dread having to perform it on someone they love, especially their own child.
I cannot know exactly what the adults around Jared were feeling or where those feelings came from. I also don’t think assigning blame helps me understand what Jared experiences today.
What I do know is that children notice and absorb emotions from the adults around them — especially uncomfortable ones like hesitation, tension, or dread. They may not understand why an adult is anxious, but they can still absorb the message that whatever is about to happen must be frightening.
Over time, Jared became afraid not only of needles, but even of the medication that was supposed to give him greater freedom. Becoming competent at self-infusion didn’t automatically erase that.
When fear becomes pressure
As Jared became more skilled, some of that fear seemed to take another form: pressure to get everything right.
When he misses a vein or feels that he has lost control of the process, the frustration can become much larger than the immediate problem in front of him. At times, that anger turns inward. Jared has long had a tendency to be extremely hard on himself when he believes he’s made a mistake. With self-infusion, that perfectionism can make one difficult attempt feel much bigger than it is.
From where I stand, a missed vein is simply a missed vein. One can try again, pause if needed, or ask for appropriate help. Nothing about one difficult attempt can erase years of skill.
But I have learned that logic doesn’t always reach the source of those feelings. I’m not the person holding the needle. And I’m not carrying all the memories that come with it.
What support looks like for me
Being Jared’s wife and care partner has taught me that support doesn’t always mean solving the problem. I have learned before how easy it can be to unintentionally invalidate what he’s experiencing when I approach his limitations from my own perspective.
Sometimes support means allowing him to acknowledge his anxiety or anger without immediately telling him to calm down. Sometimes it means reminding him, once the intensity has passed, that a difficult infusion is not a personal failure.
At the same time, making room for difficult feelings doesn’t mean that I have to become the target of them. Compassion and boundaries can exist together, too. I can recognize that something painful may sit underneath his reaction while still believing that each of us is responsible for how we treat the people around us. I also don’t assume every person with hemophilia who self-infuses has this relationship with treatment. For many people, learning the skill may feel almost entirely empowering.
For Jared, empowerment and fear happen to exist in the same space. He can be competent and still become anxious. He can value his independence and still carry old fear. He can know exactly what to do and still have moments when doing it feels much harder than it appears from the outside.
And needing help doesn’t have to diminish that independence. Jared has had to learn that asking for assistance when he needs it doesn’t make him a burden. That’s been another recurring lesson in our life with hemophilia.
Learning gradually, pausing when circumstances allow, asking for appropriate help, and giving yourself grace when something goes wrong don’t diminish independence.
Knowing how to do something for yourself doesn’t mean you have to carry every feeling it brings up alone.
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.
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