A message to my PNH community as I bid readers farewell

The time has come for me to bid farewell to readers of my column.

I took some time off from writing to reflect on my purpose, spend time with my growing family, and focus on my health. I can’t thank Bionews, the parent company of this website, enough for the opportunity and platform to write “Fatiguing but Succeeding.” It has been such a fulfilling and therapeutic experience for me.

Thinking of topic ideas each week, exploring them thoroughly, and conversing with others gave me an outlet to share my emotions and feelings about my life with paroxysmal nocturnal hemoglobinuria (PNH). In the deep corners of my mind, I discovered ideas I didn’t even know existed. I often found myself taking notes on my phone throughout the day about potential column topics.

My thoughts on PNH aren’t those of a doctor who’s earned multiple degrees and studied the disease for years; I’m just a girl who was diagnosed with a rare disease as a young adult and has learned to accept it and find ways to make my life work. I hope the way I’ve navigated my journey, including the successes and failures I’ve shared with you, will help with your own journey, whether you’re a patient, caregiver, healthcare provider, scientist, or something else.

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The biggest struggle I’ve faced during the six years I’ve lived with PNH is the feeling of control slipping through my fingers. Even after creating a to-do list the previous night, I can’t control whether I’m able to follow through on my plans for the day because sometimes my PNH symptoms get in the way. I can’t control whether I have the energy or motivation to fulfill my dreams.

Although this was a struggle, losing control gave me clarity about what’s truly important in life.

Shifting my focus to the things I can control, no matter how I feel, is a skill I’m happy to have learned. Managing my emotions and always looking for the silver lining, even in unfavorable situations, have done wonders for my mental health. I’ve discovered that I control how I view my diagnosis. This has given me a new perspective on how different people handle difficult situations, and it’s taught me grace.

Extending gratitude to my support system, including the PNH community, has helped me to never feel alone. This is also something I can control.

The parting words I’d like to share as my PNH legacy are to be kind. Spread kindness to everyone you encounter: to the doctors delivering a diagnosis, even though they’ll forever be the face you picture when you think back to the start of your journey. To the nurses poking you with needles until they find a viable vein, who are just doing their job. And to the advocates who are working to fulfill their mission of creating some light in this dark space, whether or not you agree with their opinions and word choices.

Be kind and be well, and thanks for reading.

Erin

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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