Building steady systems to manage an unpredictable life

The start of a new year often brings talk of ambitious goals, including growth, progress, and milestones we hope to achieve by year’s end. My husband, Jared, and I have those goals. In fact, we’re approaching 2026 with a specific list of things we want to build, maintain, and improve over the year ahead, both personally and professionally.

What we don’t have is the illusion that the path to those goals will be smooth.

Life with Jared’s hemophilia is unpredictable. Bleeds don’t follow calendars. Bodies don’t cooperate on schedule. Add Jared’s epilepsy and my attention-deficit/hyperactivity disorder (ADHD) into the mix, and unpredictability is just part of the landscape of our daily life.

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That’s why our focus this year isn’t on dramatic change. It’s on building systems sturdy enough to hold us when things don’t go as planned.

For us, that starts with treatment. Staying disciplined about care and continuing to find ways to access and maintain it is nonnegotiable. That’s not because it guarantees stability, but rather it gives us the best possible footing when setbacks happen. Consistency doesn’t prevent every interruption, but it can reduce the extent to which those interruptions derail the rest of our lives.

When living with hemophilia, the body is never a background detail. It shapes planning, work, energy, and timing in ways that often go unseen. Over time, we’ve learned that the goal isn’t control, but preparation. Systems matter because they reduce the number of decisions that have to be made in moments of stress.

Systems over outcomes

Big goals still require daily follow-through, even when conditions are unpredictable. That’s where systems come in.

Fitness is one example. It’s not a pursuit of perfection or performance, but rather an ongoing effort to maintain strength, mobility, and resilience. There are weeks when routines are interrupted by illness, fatigue, or bleeds. What matters isn’t uninterrupted progress, but returning to the habit when it’s possible again. Discipline, in this context, looks like consistency over time, not intensity.

Work is another. Jobs may change, income may fluctuate, and plans may need to be adjusted, but maintaining good work habits — showing up, learning, and staying engaged — creates continuity even when circumstances shift. Keeping a mindset oriented toward abundance and capability, rather than scarcity, is something we can practice daily, even when outcomes feel uncertain.

Money matters in this context not because it represents success, but rather stability. For families living with chronic illness, financial consistency is often what makes peace of mind possible. Factor products cost money. Epilepsy medication is also expensive. Even ADHD creates financial burdens due to missed deadlines and inefficiencies that quietly add up over time.

Being disciplined about work, then, isn’t just about productivity or ambition. It’s about protecting the ability to absorb disruption when it happens. Financial stability doesn’t prevent medical setbacks, but it can soften their impact. It allows space to focus on health rather than crisis management, and it supports the systems that make long-term care sustainable.

Why connection still matters

None of this happens in isolation. Systems work better when they’re supported by connection — within the hemophilia community, within healthcare, and among those committed to improving access and long-term outcomes.

Progress in rare disease care has always been a collective effort. While advocacy, research, access, and institutional support may not always be evident in daily life, they do shape what’s possible behind the scenes. Those connections are part of what allows families like ours to plan, even when nothing is guaranteed.

We’re grateful that modern treatment makes it reasonable to set goals, imagine growth, and work toward a future that includes stability, even if that stability has to be rebuilt again and again. That doesn’t mean the work is easy. With hemophilia, epilepsy, and ADHD in the picture, it often requires more effort, more planning, and more patience than it might for others.

But it’s still necessary.

This year isn’t about pretending unpredictability will disappear. It’s about committing to the systems that help us move forward anyway, one consistent step at a time.

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.