Reflections on strength, 5 years after my PNH diagnosis

A columnist's message for her younger, newly diagnosed self

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by Erin Fortin |

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

What are your go-to phrases for encouraging someone who’s going through a tough time? Do you sympathize with their situation and say you’re sorry, even though you haven’t had a hand in what’s happening? Do you hit them with the empowering “You’ve got this!”? Or last but not least, do you comment on their strength?

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), loved ones, nurses, and even strangers threw many encouraging words my way. I genuinely appreciated everyone’s kindness, and I still do — but when I began this difficult journey, I had a hard time accepting compliments on my strength.

Picture performers juggling. They’re calm, cool, and collected as they throw two balls in the air, watch them move, and catch them perfectly. Then a third ball gets thrown into the mix, and then a fourth and a fifth. The performers are moving faster, their eyes darting around trying to watch each ball, and you can feel the stress building as they juggle more and more. The performers don’t ask for more, yet more keep coming.

I was the juggler, and the balls were all the PNH challenges I faced. Being sick in the hospital was a ball I could throw up and down. Adding the diagnosis ball was difficult because, truth be told, I don’t know how to juggle. The news that I’d need Soliris (eculizumab) infusions threw my juggling act into complete chaos. I was struggling, but doing my best to keep all the balls in the air.

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

Starting Soliris infusions for the second time on my PNH journey

The reason I was almost annoyed with compliments about my strength was because I didn’t agree with them. I wanted to respond, “I’m not strong; I just don’t have a choice but to deal with it.” I felt weak, both mentally and physically; how could that possibly be the image of strength?

Today, March 27, is my five-year “PNH-iversary.” On this date I received the news of my illness, and I’d like to celebrate by going back in time and talking to my newly diagnosed self.

What I’d tell my younger self

I know you think you aren’t strong and that you’re only able to get through this because you don’t have a choice, but you’re about to embark on a journey that will give you an unbreakable, incredible, and powerful strength. You’ll break, you’ll grow, and you’ll come back stronger after each adversity.

Just like physical strength, inner strength comes from working hard and pushing yourself. When you work out at the gym, you break down your muscles so they can grow back stronger. You don’t acquire power or force immediately; it takes a while to see results.

You’ll be tested, and you’ll pass with flying colors. It’ll be like when you stressed yourself out studying for college midterms and finals, but once they were over, you felt so accomplished. You’ll be tested on how you handle hearing unfavorable medical news. You’ll be tested on your ability to spread kindness, even when you’re jealous that other people aren’t dealing with the same health issues. And you’ll be tested on staying hopeful about the future, even when the present is difficult.

So no, you aren’t strong right now. But you will be. And you’ll appreciate every step it took to get there.

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.