How hemophilia has changed what I expect from my goals
Goals are now like infrastructure, systems that support the life I'm already living
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Someone recently told me they thought they were experiencing arrival fallacy. I’d heard the term before. It describes the feeling of reaching a long-awaited goal, only to discover that it doesn’t bring the lasting happiness you imagined. After the excitement fades, life feels surprisingly ordinary again.
Before long, a new destination appears on the horizon, leading to a sense of constant struggle — a cycle that reminds me of the Greek myth of Sisyphus, endlessly pushing a boulder uphill.
The idea itself made perfect sense to me. I didn’t disagree with the concept, but I couldn’t find myself in it, either. It simply didn’t resonate with my own experience.
I’ve come to think that’s because I stopped treating goals as destinations somewhere along the way. Without quite noticing when it happened, they became more like infrastructure — systems that support the life I’m already living, rather than a finish line I’m racing toward. If you never expect arrival to deliver some final, permanent transformation, there’s nothing for arrival fallacy to crash into.
A different relationship with goals
Living alongside chronic illness changed my relationship with goals in ways I didn’t notice at first. There wasn’t a single life-altering moment that forced a new philosophy. Instead, it happened gradually through the accumulation of ordinary moments: unexpected bleeds, midnight infusions, health emergencies, and the countless adjustments they required.
Over time, I stopped expecting life to unfold exactly as planned, so my goals became more flexible without becoming any less meaningful. I’ve learned that adapting the route isn’t the same as abandoning the destination. And perhaps because I’ve worked so hard to reach those destinations despite the detours, I appreciate them differently once I get there. They don’t become the end of the story. They become the foundation for whatever I’m able to build next.
The work my goals are really doing
One of my bigger goals these days is to climb out of debt. But when I imagine what that would actually look like, I don’t picture a singular moment of triumph or a dramatic sense of freedom. I picture having enough financial margin to absorb an unexpected medical expense without immediately wondering what else we’ll have to sacrifice. I see financial freedom as the structure that allows our family to breathe easier when life becomes unpredictable.
The same is true of my desire to build multiple income streams. From the outside, that goal might sound ambitious. From the inside, it feels practical. Chronic illness has taught me that stability often depends on having options. If caregiving demands more of my time or circumstances change unexpectedly, I want our family to have enough resilience that one disruption doesn’t become a crisis.
Even my health goals have shifted in ways I wouldn’t have expected a decade ago. I want to become stronger, but not because I’m trying to look a certain way. I want to travel without worrying about lifting luggage. I want to keep pace with my daughter as she grows older. Strength isn’t the goal itself. It’s the capacity that makes ordinary moments easier to enjoy.
The same has become true of my writing. I don’t think of each published column as bringing me closer to some final version of success. Instead, every piece helps me become a better advocate, a more careful listener, and a stronger communicator. Each one expands my ability to connect with someone else who might need to be heard.
This is what I mean when I say my goals became infrastructure rather than destinations. They’re the supports that make everyday life more livable. They’re the systems that create room for joy, resilience, and ordinary moments, even while hemophilia continues to shape our family’s life.
Building the capacity to live now
But hemophilia wasn’t the only thing that had changed my perspective. Loss had changed it, too.
Loss has a way of exposing how fragile the word “later” really is. It reminds us that the life we’ve been postponing until after the next milestone isn’t guaranteed to wait for us. The future is worth planning for, but it has never been promised.
After having experienced loss, I just want to enjoy life as it goes, while building the capacity to do so.
Maybe that’s why I don’t think of my goals as mere destinations anymore. They simply exist as milestones, allowing me to keep climbing, adapting, and finding joy in the mundane.
Albert Camus wrote that “One must imagine Sisyphus happy.” For a long time, I thought that line was about enduring. Now I wonder if it’s about realizing life was never waiting at the top of the mountain in the first place.
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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