I’m ‘ringing the bell’ to mark my success with managing PNH

The ritual can commemorate more than the end of treatment, I've decided

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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.

One of my favorite reality TV shows, “Selling Sunset” on Netflix, is about a real estate firm that sells luxury homes for millions of dollars. The agents celebrate each sale by ringing a huge bell that hangs from the ceiling and is loud enough to echo throughout the office. The ringing of the bell stuck with me and suggested how I should celebrate my own victories while living with paroxysmal nocturnal hemoglobinuria (PNH).

The “Selling Sunset” bell reminded me of the ones cancer survivors ring when their chemotherapy treatment is complete. This ritual, which I’ve seen in videos, suggests empowerment and accomplishment, although it follows a much different journey than that of selling a house.

When I was beginning my PNH treatment, I saw a social media video of a teenage boy ringing a cancer bell. I felt happy for him, but also jealous. “PNH is chronic, and my treatments will be for the rest of my life,” I thought. “I won’t ever have the opportunity to ring the bell.” At the time, I hadn’t even accepted my own diagnosis yet.

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Marking my accomplishments

Life with PNH means I don’t have a bell at the end of my health journey because the condition will never end. I recognize now how that these thoughts weren’t emotionally healthy, but they were my genuine initial reactions.

As I’ve come to accept my PNH diagnosis and the weight of what “chronic” means, I’ve realized that my jealous reaction was completely wrong for me. I don’t need to reach the end of my PNH experience to ring the bell. I can clang it whenever I want — daily, weekly, or yearly — as many times as I want.

I’m going to ring my bell anytime I have that same feeling I sensed in the video. If I have anxiety over a doctor’s appointment, I’m going to ring the bell once it’s over. After my Ultomiris (ravulizumab-cwvz) treatments, I’m going to ring the bell, too. And anytime I struggle to get through the day before bed, I’ll ring the bell.

I find myself easily sidetracked by the fast-moving pace of life, especially with a toddler running around, and too often I forget to celebrate my winning moments, no matter how big or small. Living with PNH, I have days when it’s difficult to maintain my energy enough to complete daily activities. But I’ve also realized that I’m starting to take my good, symptom-free days for granted.

I love the idea of ringing a bell or performing a physical activity that forces me to stop and concentrate on the success of an empowering accomplishment. That success could be something as small as showering when I didn’t think I had the energy for it. Or it might be as big as a step forward in my career.

I can’t wait to begin my “chronic bell-ringing” year and see how it affects my mental health. I encourage you all to stock up on bells as Rare Disease Day approaches on Feb. 29. Perhaps we can all ring our bells together!

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.