I’m wiser today about processing the emotional roller coaster of PNH
The most important thing I've learned is to give myself grace
It’s been almost four months since I opened up in a column about the emotional roller coaster of living with paroxysmal nocturnal hemoglobinuria (PNH), and truthfully, that ride hasn’t stopped. But I’ve grown. I’ve learned to lean into the twists and turns instead of bracing against them. The emotions are still there — fear, fatigue, uncertainty — but so is resilience, and that part of me has only gotten stronger.
These past few months have brought unexpected setbacks. A few lab results were less than ideal. Fatigue crept in at the most inconvenient times, including at my children’s school events, during work deadlines, and even on date nights I’d been looking forward to. And each time I had to cancel or push through, I felt guilty.
I used to beat myself up for being unreliable. Now, I pause and remind myself: I’m not unreliable, I’m managing a rare, unpredictable illness with many symptoms the best I can.
I’ve realized that part of processing this emotional roller coaster is giving myself grace. That means being OK with not being OK. I used to think strength meant pushing through and showing up no matter what. But I’ve found strength in rest, in asking for help, in saying, “I can’t today.” That’s something PNH has taught me: to value my energy like it’s gold.
Emotionally, I’ve started opening up more to my inner circle. I’ve learned to say, “Today is tough,” without feeling like I’m a burden. I’ve started therapy again, not because I’m broken, but because I deserve support. And I stay connected to communities like PNH Support and the Aplastic Anemia and MDS International Foundation, where others get what I’m feeling without explanation.
Most importantly, I’ve started celebrating the emotional wins. When I attend a full day of work without brain fog, when I have enough energy to cook dinner or take a short walk with my children, I celebrate. I’ve learned that joy lives in the small moments, even when illness tries to overshadow them.
Living with PNH still comes with unexpected emotional dips. But these days, I ride them with more confidence. I don’t always feel brave, but I show up anyway — for myself, for my children, and for this life I’m still building. And that, to me, is the truest kind of strength.
So let the ride continue — but this time, with more tools, more support, and a lot more self-compassion.
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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