Living with invisible illness builds strength that others can’t see

There’s a quiet kind of strength that doesn’t get applause. It’s not loud or dramatic. It’s the strength it takes to keep going when your body feels like it’s quitting on you. The kind that gets up anyway, that smiles through fatigue, that finds peace in small moments others might overlook.

Living with paroxysmal nocturnal hemoglobinuria (PNH) or any other invisible illness teaches me that I don’t need to look strong to be strong. And if you’re walking this same path, neither do you.

People don’t always see the internal battles we face. They see us in the grocery store, at work, or helping our kids with homework and assume we’re fine. What they don’t see is the planning it took to get out the door, the nap required before leaving the house, or the crash we’re bracing for after the day is done. They don’t see the blood tests, the infusions, or the mental toll of managing a rare chronic disease.

And yet — we show up. That, to me, is power.

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It took me time to stop apologizing for what this illness demands of me. I had to learn to give myself grace when my body needed rest and to stop tying my worth to how much I could accomplish. PNH doesn’t follow a predictable course. Some days I feel almost “normal.” Other days, brushing my teeth feels like a triumph. Both are valid. Both are victories.

If you’re new to this website and have never heard of PNH, it’s a rare, life-threatening blood disorder that leads to the destruction of red blood cells and can cause severe fatigue, blood clots, and other complications.

If you have PNH, remember, you’re not lazy. You’re not weak. You’re not broken. You’re managing something most people couldn’t begin to understand, and you’re doing it with grit and grace.

What helps me most is remembering this: I’m allowed to be proud of myself — not just for the big wins, but also for every moment I choose to honor my well-being.

So let’s normalize celebrating the quiet victories. The times we listen to our bodies. The boundaries we set. The way we keep loving our lives, even when they look different than before.

I’m not just surviving anymore — I’m rebuilding. With compassion. With presence. With purpose.

And so are you.

You don’t need permission to own your story. You already are the hero in it.

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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