Finding the strength to rise again after a scary night in the ER

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, including patience, resilience, awareness of my own body and many symptoms, and an appreciation for every stretch of calm between the storms. But every now and then, something reminds me that no matter how strong I’ve become, I’m still human, and this illness can still shake me in ways I don’t expect. A recent trip to the emergency room was one of those moments.

It started with a pain in my abdomen that didn’t feel like the usual discomfort I’ve learned to navigate. It was sharper, heavier — like something deep inside me was waving a red flag I couldn’t ignore. Then came the blood in my urine — not just the faint discoloration I’ve seen before, but an alarming amount that stopped me in my tracks. By the time I got to the ER, I could feel my body fighting, and for the first time in a long time, I didn’t feel in control.

Sitting in that cold room under fluorescent lights, I felt myself slip into a space between fear and exhaustion. I explained PNH to the ER team the same way many of us with rare conditions often have to: carefully and patiently, hoping they understand the urgency without needing a full medical briefing from scratch. But even after I did, I could see the unfamiliarity in the physician’s eyes. And as much as I know it’s a rare disease, in that moment it reminded me just how isolating rare can feel.

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When the ER doctor stepped out to contact my hematologist for guidance on treatment, I felt a wave of emotions I wasn’t prepared for. Part of me was grateful they were taking the right steps. But another part of me felt exposed — like my well-practiced strength had cracked open, showing just how vulnerable I really am.

I sat there on the edge of that hospital bed, shivering under a thin blanket, and for a brief moment, I felt hopeless. Not because anyone did anything wrong, but because I was reminded that even with all I’ve learned, all I’ve overcome, and all the courage I’ve carried since being diagnosed, I am not invincible. PNH still demands space in my life, and sometimes it takes it violently.

But here’s the thing I held on to, a whisper of truth I’ve had to relearn many times since my diagnosis: Strength isn’t about never falling. It’s about acknowledging that setbacks happen, that bad days still come, and that moments of uncertainty don’t erase all the progress I’ve made. That night in the ER didn’t make me weaker. If anything, it reminded me that my resilience is real, even if it trembles on some days.

I left exhausted, still sore and shaken by the conclusion that I’d had a bad flare-up trigged by a common cold. But I was also deeply aware that surviving these moments is part of my story. Yes, I have downtimes. Yes, I have moments when fear takes the wheel. But I also have the power to keep going, to advocate for myself, and to rise again when my body reminds me that PNH is still here.

And rising again — sometimes quietly, sometimes shakily — is still strength.

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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