In between HAE attacks, fear and uncertainty weigh heavily

Some people measure their lives in milestones like birthdays, promotions, and weddings. I’ve come to measure mine in disease attacks — the kind that hijack my body, rewrite my plans, and make me feel like a prisoner and stranger in my own skin.

But what about the space in between those attacks?

From the outside, the “in-between” looks like my good days. The so-called easy days. The days when everything is “back to normal.” But that’s anything but the truth. The in-between carries its own kind of weight. It’s quiet, yes, but it’s anything but peaceful. It’s waiting. Watching. Worrying. It’s holding my breath, even when I’m not swollen.

When I’m not actively in the throes of a hereditary angioedema (HAE) episode or a multiple sclerosis flare, people assume the threat has passed or I’m perfectly fine. After all these years, I’ve learned to grin and bear it and mastered the art of “making it look good.” People see me upright and smiling and think the storm is over — or worse, that it must not have been all that bad to begin with.

But for many of us living with HAE or other chronic illnesses, the fear never fully lets go. I carry it with me everywhere: into bed, into parent-teacher conferences, into doctors offices, grocery stores, and social functions. It shows up in how I pack my bag, especially when I travel, and plan my calendar. It’s the reason I silently run through a checklist every time I leave the house.

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Learning to live with uncertainty

The attacks themselves are brutal, but at least I know what’s happening. The in-between feels murkier. I don’t “look sick.” I’m not in a hospital bed. But my body feels like a loaded question with no clear answer.

Some days I feel physically fine but emotionally wrung out. Hypervigilance is exhausting: the constant scanning, the mental gymnastics of deciding whether a tingle is harmless or the beginning of swelling. Every meal, every stress, every random ache becomes a calculation. And I rarely get to fully exhale, because even on my best days, the what-ifs hang heavy.

I’ve canceled more plans than I care to admit — not because I was sick, but because I was scared I might be. The guilt of disappointing others is real. So is the grief of missing out on the life I want to fully live.

And yet, in this uneasy space, I’ve discovered something unexpected. Rest is not laziness! It’s preparation. Small joys matter. Showing up for myself, even quietly, even while afraid, is still an act of strength.

Over time, I’ve learned to build rhythms that anchor me: medication routines, backup plans, safety nets. But I’ve also learned to soften into the moments that remind me why I keep going: journaling, laughing with my kids, letting myself simply be.

Living with HAE isn’t just surviving attacks; it’s carrying the knowledge that one can come at any time and still choosing to live anyway. It’s making room for joy amid the uncertainty. It’s finding beauty in fragile spaces that feel like they might collapse at any moment.

So if you see me smiling, know this: I’m still calculating, still preparing, still holding my breath in quiet ways. But I’m also learning to breathe — fully and intentionally — even during the in-between.

Because the in-between isn’t where life pauses. It’s where life continues — quietly, bravely, and wholly mine.

Note: Angioedema News 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 other 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.