Why PNH makes it hard for me to sympathize with others

My severe PNH symptoms can lead to unhelpful health comparisons

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by Erin Fortin |

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I’m proud to have compassion and empathy for others. Connecting with people’s experiences, especially healthcare struggles, is very fulfilling for me. I can relate, offer advice, and give words of encouragement that I know will help.

Because I’ve experienced medical trauma related to my rare blood disease, paroxysmal nocturnal hemoglobinuria (PNH), my heart physically hurts when someone tells me about their own medical trauma. It reminds me of my PNH symptoms and pain, and I feel terrible for them.

But when it comes to medical sympathy, I’m not as proud of my response. When people tell me about health struggles that aren’t as severe as mine, I get frustrated. I know I shouldn’t compare our situations, but I wish I could say, “I’ll trade places with you any day.”

When someone complains to me about a minor symptom, it can feel like they’ve forgotten what I go through on a daily basis. If they complain about being tired, I automatically think, “Yeah, but that’s not as bad as having fatigue.” Or if someone makes a comment about avoiding medication because they don’t believe it’s good for their body, I think, “I don’t have a choice but to depend on medication.”

I find it difficult to navigate these conversations, especially when it seems like life gave that person more lemons than it gave me. I wish we could temporarily swap bodies, like in the movie “Freaky Friday,” so they’d understand what my PNH symptoms are like.

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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.

I love myself even though PNH works against me

When these thoughts cross my mind, I try to practice empathy and remind myself that even if a person’s health struggles aren’t as severe as mine, their symptoms may still be severe for them. It’s not easy comforting someone who has a headache they’d rate as a 2 out of 10 on the pain scale, when I’d rate my headache a 9 out of 10. But pain is subjective, and their headache could still be a lot for them to handle.

I wish my empathy would prevail more than it has in these conversations. It’s hard not to compare my symptoms or pain with that of others, but I hope one day to be better at it. I catch myself thinking, “I wish I could have their problems instead of mine,” but I know that’s not a healthy mindset. I’m working hard to push out those negative thoughts, but I’m not always successful at it.

Following are three tips I keep in mind when talking with others who face medical challenges:

1. Keep the conversation focused on them

We are discussing their problems, not mine. My health issues are not a concern at the moment, and I need to be present to comfort them. If they ask about my health, then we can talk about me. But for the moment, I need to let them vent.

2. Remember who I used to be

I remind myself of the anxiety I experienced before I was diagnosed with PNH and how scared I was in medical situations. I was in the same spot that my conversational partner is in now, of not knowing what life is like with a serious health condition. I ignorantly thought my problems were the absolute worst — not because I didn’t care, but because I didn’t know what a chronic illness was like.

3. Never say ‘it could be worse’

This statement triggers comparisons, and because of my PNH symptoms, I often feel like I’d “win” the competition of who has it worse. But again, the conversation isn’t about me. I don’t want to compare myself with others. Plus, this statement usually doesn’t make someone feel better. Instead, I try to say something more empowering, such as, “Look at how far you’ve come.”

My goal is to switch from a jealous mindset to one of love and compassion. Rather than thinking, “I wish I could have their smaller problems,” I want to say, “I hope they never have to experience my big problems.”

I have seen illness turn some people bitter, and I don’t want that for myself. I want to be someone that people can turn to when they need medical advice or a shoulder to cry on. I want my door to stay open, even if my mind sometimes tries to close it.

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.