The lingering question after my PNH diagnosis was ‘Why me?’

The answer can be elusive and occupy thoughts for a long time

Erin Fortin avatar

by Erin Fortin |

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From the moment I was diagnosed with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), I felt like I was constantly searching for the answer to the question “Why me?” My mind would drift in different directions, and it wasn’t until recently that I finally found an answer.

The first response I thought of was karma. Did I do something terrible in my life that merited this? I would repeatedly replay in my head the decisions I’ve made to determine whether I’ve done something wrong. I came up with nothing.

The worst thing I could think of was cheating on an AP physics assignment in 10th grade. However, I don’t think that would justify a chronic rare disease. I crossed karma off my list.

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Taking one for the team

My mind drifted to thinking that maybe I just had to take one for the team, similar to the idea of taking a bullet for someone. Maybe this fate was meant for one of my loved ones and I took it from them.

It’s a strange thought, but I wondered if a future me saw one of my loved ones go through this and wished it was me instead. So the universe granted my wish and gave me PNH. This thought remained with me for a while, but I knew it was too far-fetched to be my answer.

Strong enough to handle it

The next potential answer came from an inspirational saying I had heard. I don’t remember the exact wording, but it was something like “battles are given to the strongest soldiers” or “struggles are given to those who can handle it.”

I first took this as a compliment to my strength and ability to handle the diagnosis. But I couldn’t accept that the reward for being strong was more struggle. If I kept fighting, where would the end of the struggle be?

The question “Why me?” has consumed my thoughts since the day I was diagnosed. Anytime I was alone, I’d search through the corners of my mind for an answer. I thought that perhaps if I knew the answer, I could justify whether what I’m going through is worth it.

As I continued searching, I became more involved in the PNH community. I connected with other patients and started using my voice to share my experiences. I helped create resources for the community by making videos, speaking on webinars, and writing blogs. I helped spread awareness as much as I could.

After years of searching for an answer, I am confident that I now have one. PNH chose me because it knew I would do everything I could to be an unstoppable voice, advocate, and force.

The PNH community may be small because we are rare, but there is still a need for support. This includes emotional support to help process the diagnosis, treatment support to help manage our care, and financial support to help pay medical bills.

There is work to be done, and I want to do my part. A part of me will always wish I never had PNH, but at least I am finding comfort in not only answering the question “Why me?” but also answering the question “Is it worth it?” The answer is yes.

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.