4 questions I ask when an event is planned but PNH symptoms arise

Being honest with yourself and not feeling guilty are important

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by Brandi Lewis |

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Last weekend, I attended a first birthday party for my friend’s son. During the week leading up to the party, I wasn’t feeling my best, as I was struggling with severe fatigue and headaches. I could hear my body telling me to rest and take it easy.

My invisible illnesses, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), were causing me some strong symptoms. While I felt them inside my body, there weren’t any external signs of them. When my body is feeling its worst, I could lie down on any couch and quickly fall asleep. This is a struggle for me, because when I speak up about how I am feeling, the response is often, “Well, you look fine.”

I could’ve decided not to attend the birthday party, but it would’ve become yet another event that I had to put aside due to illness. It’s often hard to balance my PNH symptoms with striving to live a somewhat “normal” life. During this struggle, I’ll ask myself questions to understand whether I’m doing myself a disservice or I’m being rational about my decision.

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One important thing to note is that during these times, I’m reminded to give myself grace. Whatever decision I make for my life, it’s OK. Life always works itself out. So, if you’re struggling to achieve this balance, don’t be hard on yourself for making the decisions you’ve made. Know that you’re doing what makes you feel comfortable and there’s nothing wrong with that.

So what questions do I ask myself before deciding whether to attend an event?

1. Will I regret not going?

I want to make sure I won’t regret attending an event. Some events are personal and important and bring the family together. I ask myself if it is an important event that I will look back on and wish I had attended.

2. How do I really feel?

I’m so used to putting on a brave face that sometimes I have to stop and be honest with myself. As I ask myself how I feel, I check in with my body. What hurts and what doesn’t? Where do I feel the most pressure and what is my pain level? Checking in with my body helps to stop myself from saying “I’m fine” and get a true diagnosis of how I’m feeling.

3. Is it worth it?

I play devil’s advocate for this question and compare both sides. If it is worthwhile to go, will it cost me and will I wish I would’ve said no? Or will it cost me if I don’t go and wish I was there? I also question whether it is worth putting my body through long hours of perhaps being on my feet or talking to people at a function.

4. Am I using my illness as an excuse?

One thing I want to make sure I’m not doing is using my illness as a crutch. It’s easy to use the excuse of “I’m not feeling well” to get out of an event. If I don’t want to go, it’s OK, but I must be honest about whether the reason is my health.

All of this might seem a little dramatic, but sometimes it’s hard to decide whether to attend an event because of an illness. Striking a balance can be tough, but by using these questions, I can make sure that I’m putting my life in perspective.

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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