When the storm clears: A day in my life without PNH symptoms
I’ve learned not to let fear steal the joy of now
Some days I wake up and forget for a few golden seconds that I have paroxysmal nocturnal hemoglobinuria (PNH). My eyes flutter open, and there’s no tightness in my chest, no pounding in my head, no crushing fatigue pulling me back into the mattress. There’s just morning light, the scent of coffee from the kitchen, and the quiet hum of a house full of love. These are the days I treasure.
On days like these, I don’t feel like a patient. I feel like me — the version of myself that existed before my diagnosis, before blood draws and infusions and explaining my rare condition over and over again. I can think clearly, move freely, and pour myself into moments that matter.
I usually start with gratitude. That might sound cliché, but when your body’s been through war and wakes up at peace, you don’t take it for granted. I might linger a little longer in the shower, dance around the kitchen while making breakfast, or sneak a few extra minutes hugging my daughters before school. They don’t always know the full weight of those embraces, but I do.
Work feels different, too. I’m sharper, quicker, more confident. As a financial analyst, I rely heavily on focus and precision — and brain fog has often made that a mountain to climb. But on symptom-free days, it’s like the clouds have cleared. I can problem-solve with ease, contribute without second-guessing myself, and finish tasks with energy left to spare. That’s a win.
The real joy, though, comes after work when I can be present. I help with homework, cook dinner, and maybe even plan a weekend outing. These are the things that chronic illness often steals: spontaneity, laughter, and the luxury of showing up for your people without pain lurking in the background.
Of course, even on my best days, there’s a quiet awareness that tomorrow could be different. That’s the unspoken truth of living with PNH. But I’ve learned not to let that fear steal the joy of now. Instead, I lean in harder. I speak more softly. I laugh louder. And I hold these memories close, knowing they’ll carry me through the next hard stretch.
If you’re navigating life with PNH or any invisible illness, I want you to know this bit of my experience: The good days do come. They might be rare, but they’re real. And they’re worth celebrating.
If you’re newly diagnosed or just looking for more connection, a couple places that helped me feel less alone are the websites of the PNH Global Alliance and the National Organization for Rare Disorders.
Until next time, I’ll keep soaking up these light-filled days — and hoping yours are just around the corner.
Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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