The top 3 responses to my PNH diagnosis from anyone new

Since my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), I inevitably have a conversation about my health journey each time I meet someone new. I’m an open book and will discuss what I’ve been through medically and continue to handle daily, aiming to invite a safe space for people to ask questions in case they’re curious.

As PNH is a difficult concept to understand, I try to present it in layers. I start with a basic explanation: “I have a rare blood disorder.” If they ask, I’ll go into more detail to explain what PNH does to me, but I’ll start with simple points that are easier to process.

The person’s body language and facial expressions offer an immediate tell of where the conversation will lead. Some people look uncomfortable, as if they don’t want to know more, and I get it; I used to become squeamish at the word “blood.” If I see any sort of discomfort, I don’t continue and change the topic.

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Other times I see fascinated reactions, as if they’ve found a four-leaf clover. They’ll usually ask follow-up questions, which I’m happy to answer. Although medical conversations could make me extremely vulnerable, especially since most of my trauma stems from my diagnosis, I don’t feel vulnerable in the moment of sharing. I wear my medical trauma as a badge of honor, and I’m proud to discuss the obstacles I’ve overcome.

Here are the top three responses I usually receive after telling someone about my PNH diagnosis.

1. ‘How did you find out you had that?’

After you tell someone you have a roughly six-in-a-million disease, they’re typically curious to know how it happened. I answer this question in layers, too. Even though I had a few years and multiple symptoms leading to the diagnosis, I start with the one that broke the straw on the camel’s back.

“I urinated blood, ended up in the hospital, needed a blood transfusion and a bone marrow biopsy, and was eventually tested for PNH,” I usually say. Since that sentence covers the details, there typically aren’t follow-ups about the diagnosis itself. But if there are, I go into more detail.

2. ‘I’m so sorry.’

This one is probably my favorite response because it gives me the opportunity to preach positivity. I appreciate the person’s empathy, but cut it off right away by assuring them that I’m OK. I’ve come a long way to accept my new lifestyle, deal with the lemons life gave me, and embrace my difficulties. I want the person to know that even though PNH is serious, I’m grateful to live a relatively normal life. There’s no need to worry, I say.

3. ‘Will you have this forever?’

As much I wish my answer to this question was no, I give them the harsh reality that yes, it’s a chronic condition.

But again, I try to ease their worry by saying I’m OK and stable. I’ll go on to talk about my Soliris (eculizumab) treatment schedule and my trips to an infusion center every other week. I spin the negative feel of that news with humor, saying I’ve grown to value my “me time” while receiving the medication because infusion centers don’t have dishes or laundry! That usually gets a chuckle and lightens the conversation.

Overall, I’d say the responses to my PNH talk depend on how I steer the conversations. Thinking back to the beginning of my journey — before I accepted my diagnosis — the exchanges leaned toward negativity and “woe is me” thinking, leaving both myself and my new acquaintance unsettled and upset.

As my journey continued, I realized that I didn’t want my PNH legacy to be filled with sorrow, even though the disease has affected me greatly. I do my best to keep the discussion lighthearted, positive, and open, going into as much or as little detail as the flow of the conversation seems to warrant.

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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