Staying positive during a PNH flare isn’t easy, but it’s worth it
It's about choosing to find light even in the darkest hours
Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, but one of the hardest lessons has been learning how to stay positive during a flare-up. When symptoms hit — in the form of crushing fatigue, dark urine, headaches, or an overwhelming feeling of weakness — my entire world can come to a halt.
What I’ve realized, though, is that positivity doesn’t always mean being cheerful or pretending that everything is fine. For me, it’s about choosing to find light even in the darkest hours. It’s about allowing myself to acknowledge the struggle while still holding on to the hope that tomorrow can be better.
During flare-ups, I remind myself that my body is fighting hard. Instead of seeing exhaustion as a failure, I try to see it as a sign of resilience. Rest becomes part of my healing, not a setback. I give myself permission to pause, nap, or cancel plans without guilt. That shift in perspective has been life-changing.
Another thing that helps me is focusing on the small joys. When I can’t manage a full day of activities, I’ll lean into little things that make me smile — such as laughing with my children, listening to uplifting music, or simply stepping outside to feel the sun on my face. Those moments remind me that life still holds beauty, even when my body feels heavy.
Support also plays a huge role. I’ve learned to lean on my loved ones and open up about how I’m feeling instead of bottling it inside. Sometimes just hearing the words “I understand” or “I’m here” is enough to pull me through the hardest flare days. For those of us with PNH, connection and understanding from others can be just as healing as medicine.
Lastly, I stay positive by focusing on what I can control. Whether it’s sticking to my treatment plan, eating in a way that supports my health, or staying on top of doctor appointments, these actions remind me that I am not powerless. Flare-ups may slow me down, but they don’t define me.
PNH will always have its challenges, but I’ve learned that positivity is a choice I can make every day — even in the storm of a flare-up. It’s not always easy, but it is always worth it. My hope is that anyone walking this same road finds their own light to hold on to, no matter how tough the journey feels.
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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