There are people who live by five-year plans. Color-coded calendars. Life goals with deadlines. I was never one of those people, so why is this so hard?
I wasn’t the five-year-plan type.
I didn’t have my life mapped out on vision boards or bullet journals. I made choices, took chances, and followed gut feelings more than timelines.
So in theory, this—this not knowing what’s next, this living day to day—should feel familiar. Comfortable, even.
But it doesn’t.
It feels heavy.
It feels lonely at times.
It feels like being unmoored, but without the thrill of freedom. Because the kind of uncertainty I used to live with was a choice. It came with possibility. Flexibility. A sense that I was in control, or at the very least, okay if I wasn’t. This uncertainty is different. It’s imposed, not chosen.
It’s the doctor’s office kind. The waiting-for-results kind. The will-this-come-back kind. The white coat syndrome kind.
The kind that steals time and plans and the illusion of control.
I didn’t need to know everything before. But I at least believed I could figure it out. Now? I’m learning to live inside the not-knowing. To make space for it. To let it exist without letting it take over. Some days, that feels like resilience. Other days, it just feels like exhaustion.
The New Normal
Living with chronic uncertainty—whether it’s tied to health, parenting, money, grief, or all of the above—isn’t just about the unknown. It’s about the never known. It’s about building a life around question marks. Not just questions I have, but often, questions even the doctor’s don’t have answers to. There’s no timeline. No finish line. No guarantee of knowing more or knowing when. Just a string of “possibly” and “let’s watch it” that I have to learn to live inside of.
Some days, I handle it gracefully. I answer emails. I have a cuppa. I make lots of inappropriate jokes that make others uncomfortable but me laugh (#worthit). Other days, I spiral because I have a weird bruise or an ache that I didn’t have yesterday. Some days I parent through a fog of fear, wondering how to raise two young girls with joy and curiosity when I’m carrying so much unknown about my own body – and about theirs. I want to quietly manage the weight of it all so they experience a childhood full of magic and freedom and light.
But there’s something different about this new normal, something different from other things I’ve had to “get used to” – it doesn’t actually start to feel normal just because it’s been around awhile. It still catches you off guard. It still means that dark thoughts creep up in the middle of zoom calls and during trips to get ice cream. It still wears you out. You might get better at navigating it, but you never stop wishing for steady. Instead, you just learn to live fully anyway. In the middle of the not knowing. On the edge of the what-ifs. With humor when you can. With gentleness and grace and patience when you can’t.
So How Do You Conquer the Uncertainty?
That’s a trick question.
I don’t think you ever conquer chronic uncertainty—you just learn how to carry it without letting it crush you. Some days it’s a quiet weight in your pocket. Other days it feels like a boulder sitting on your chest. But over time, you figure out how to breathe around it. You learn when to set it down, even if only for a moment, and let joy in instead. You learn who in your life helps you carry it and who makes it feel heavier. And maybe most importantly, you learn that survival doesn’t always look like strength. Sometimes it looks like softness. Sometimes it looks like grace. Sometimes it’s simply saying “This is hard” and letting that be enough for today.
Here’s how I’ve been surviving.
1. I Make Plans Anyway
I still make some plans, when I feel like it. But now I hold them loosely. I hope for things. I work toward things. But I leave space for detours, cancellations, or full-on rerouting. It’s less planning and more plotting a hopeful hypothesis – something that could hold, but doesn’t have to. A soft sketch instead of a carved-in-stone map.
Because the truth is, I don’t want to lose the magic that dreaming brings. Even in a life shaped by Li-Fraumeni Syndrome—even with scans and surgeries and what-ifs always on the horizon—I still crave the spark of imagining something good. I want to plan birthday parties, beach days, and messy, ordinary summers. I want to picture my daughters growing up, creating their own dreams of what might be.
This way, I still get to look forward. I still get to dream, to schedule the thing, to imagine the future. I need that joy. That hope. It’s part of what makes the now bearable. It reminds me that uncertainty doesn’t cancel out possibility. So I dream – carefully – but I dream anyway.
2. I Say No, Often, and Whenever I Feel Like It
I don’t always have the bandwidth to attend your thing, return that call, join that team, or pretend I’m not hanging on by a thread. So I say no. Often. Without guilt (okay fine – there’s sometimes guilt; I’m still working on that part).
I used to feel like I owed others my energy, even when I had none to give. I’d stretch myself thin trying to be dependable and responsive. But chronic uncertainty – especially the kind that comes with Li-Fraumeni Syndrome – well, it lets you rewrite the rules a bit.
Now? I protect it like it’s medicine. Because it is. It’s what gets me through scans and surgeries, what I save for my kids after work, what I need to show up for myself when everything feels like too much.
No is a complete sentence.
No is a boundary. No is not a rejection – it’s preservation. It’s survival.
No is how I make space for yes when it actually matters. Yes to rest. Yes to joy. Yes to going out when it feels right. Yes to time with people who truly see me. Yes to quiet.
I no longer feel that I owe my energy to anyone. Instead, I owe it to myself first – and to the two little girls watching me learn how to protect it.
3. I Find Anchors, Not Answers
When everything feels slippery – when the ground shifts beneath me faster than I can adjust – I’ve stopped expecting clarity to come rushing in. Instead, I find small things to tether to: A hot cup of coffee. Check-ins with friends. Morning walks on the beach. Writing this blog. Making my bed (just kidding. I rarely do that, but I do think about it often and maybe that counts for something).
Answers might not show up. Not the kind I want anyway. Not the ones with certainty or closure or a tidy little bow.
But anchors? They keep me from floating too far off. They ground me in the present when the future feels unstable. They remind me that even in a life of unknowns, I can still choose to return to the things that feel steady, or sacred, or simply just mine.
4. I Don’t Actually Limit the Doom Spirals
People say to give your emotions a time limit. “Twenty minutes to spiral, then move on.”
That’s cute. I admire those people. I am not one of them.
When fear or grief show up, I tend to let it move in. I give it snacks. I sit with it until it gets bored or I get tired. Sometimes that’s what I need. Sometimes it just leaves me raw, empty, and quiet in a way that doesn’t feel like peace.
I give myself permission to feel everything, but that’s never been the hard part. The hard part is what comes after.
Getting up. Re-engaging. Feeding my kids or answering an email or stepping back into a life that kept moving while I was emotionally horizontal. The real challenge isn’t avoiding the spiral; it’s refusing to let it become permanent. It’s remembering that I’m allowed to visit the dark corners of every room without building a home there.
Maybe someday I’ll try time-limiting it.
Or maybe not. Maybe what really matters more is that I just keep coming back.
5. I Say It Out Loud (Even When It’s Weird, Especially When It’s Weird)
Uncertainty thrives in silence—so I talk. Not always eloquently. Not always in the right order. But I say things out loud.
To friends.
To colleagues.
To my blog.
To strangers who didn’t ask.
Once, to a sweet, unsuspecting barista who now knows more about breast reconstruction than he ever signed up for.
To my doctors, question after question. Thought after thought. Portal message after portal message.
Speaking my journey is how I make sense of it. How I connect. How I stay human in all this mess. How I survive it.
Sometimes it’s funny. Sometimes it’s raw. Sometimes it’s my voice cracking, trying to explain why drain tubes should never exist. Sometimes it’s a question no one has an answer to.
I don’t speak because I’ve figured it all out. Trust me, I haven’t.
I speak because it’s the only way I might—and because maybe, someone else will hear it and feel a little less alone.
6. I Zoom Out. Way Out.
When the spiral starts—when my thoughts race, my worries multiply, and the future feels both a million miles away and also my next stop—I try to step back as far as I can. Not just a glance away, but a full, sweeping zoom out that puts everything into perspective. The kind that shrinks everything down so I can see what really matters.
Because here’s the truth I come back to, again and again: Nothing is certain for anyone. No matter how confident people seem, no matter how meticulously they plan or try to control their surroundings, no one holds a guaranteed map of what lies ahead. Life’s uncertainty is universal. It’s not just mine, or yours, or the people living with chronic health issues—it’s everyone’s secret companion. The difference is, most of us get better at pretending otherwise. We act like we have it all figured out. We put on brave faces, make detailed plans, set timelines, and convince ourselves the future is predictable, stable, safe. That illusion—while comforting—is just that: an illusion.
Chronic uncertainty pulls back the curtain on that illusion. It strips away the safety net of expectation and predictability, and yeah, that really sucks. It’s disorienting and exhausting to live in a world where questions outnumber answers, where “oh shit, what’s that” isn’t a matter of mild curiosity but another potential diagnosis. Another unwelcome re-routing of your life.
But here’s the surprising flip side: when chronic uncertainty removes the ilussion, other things get louder. Things like presence. Intuition. Gratitude. The ability to find grounding in people instead of plans. It clears space for the now. Space for what’s real and immediate—the moments that actually exist, not the ones we worry will come or go. When certainty dissolves, what remains is today. The breath in your lungs, the small kindness you offer yourself, the connection you make with someone else.
The future might always feel foggy, but I’m finding new ways to live well in the in-between. Not by pretending it’s easy or by forcing silver linings. But by telling my truth, holding what’s good as often as possible, and finding fragile beauty in the uncertainty itself.
We’re all just trying to build lives out of loose threads—and honestly? Some of the patchwork is pretty damn beautiful.