Guest Voice: What I’ve gained from doing my own hemophilia infusions
Self-infusing taught me to challenge my limitations and keep growing
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Hemophilia has required me to make some major adaptations in my life. One of the biggest came when I was younger and needed to start infusing medication on my own.
At first, doubt and fear crept in. Can I really do this? Is it going to hurt? But the staff at my hemophilia treatment center encouraged me. After some helpful lessons from my nurses, I felt prepared and more confident. I practiced and had patience, trusting those lessons.
That experience taught me the importance of knowing myself, understanding my specific challenges, developing a personalized approach to managing them, and building a strong support system. I leaned on my medical team, asked questions, and kept learning. Hearing from others living with bleeding disorders about their approach was also a big help.
Keep evolving and pushing
There are times when I miss a vein or something else doesn’t go quite right, but I no longer feel anxious about it. Instead, I have confidence and ownership. Ownership matters because infusions are what protect me and allow me to push my limits.
When I’m out doing an activity or running a race, being prepared allows me to focus on the start line and the journey ahead. This has been incredibly powerful, enabling me to be self-reliant and to go anywhere without that fear of “what if.”
Self-infusion also taught me to challenge my limitations and not to accept “impossible” at face value. There’s almost always another path. We just have to be willing to find it, ask for help, and trust the people who understand our journey.
The greatest thing we can do is to have a mindset of self-awareness and growth. If you don’t know how to do something, ask for help. There are so many people willing to offer their insight and expertise. Someone just like you started in the same spot you’re in now.
Self-infusion has become a framework for how I approach everything, and it’s how I continue to evolve and push. Because if I could learn to infuse myself, I can figure out anything.
Adaptation is about never giving up, no matter what we’re facing. We arm ourselves with knowledge, learn from people who’ve been there before, and keep practicing. Eventually, that struggle becomes a real sense of ability and accomplishment that can help us live and thrive.
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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.
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