Helping my partner better understand PNH brought us closer
Guidance, communication, and a little grace made a big difference
When you have a rare disease like paroxysmal nocturnal hemoglobinuria (PNH), it affects every part of your life, including romantic relationships. In addition to managing symptoms and navigating treatments, one of the most difficult parts for me was figuring out how to help my partner truly understand what I was going through.
Because PNH is invisible to most people, it’s easy to look “fine” on the outside even when your body is fighting hard. Early on, I assumed my partner would just get it. But the truth is, he couldn’t — not without guidance, communication, and a little grace from both sides. So I had to learn how to share.
This included medical facts, such as how PNH destroys red blood cells, causing extreme fatigue, anemia, and blood clots, as well as the emotional weight of it: the guilt I felt canceling plans, the frustration of brain fog when trying to hold a conversation, the deep exhaustion that sleep won’t fix.
I started by giving my partner resources. I asked him to read articles from trusted sources like the PNH Research and Support Foundation, PNH News, and the National Organization for Rare Disorders — not so that he’d become an expert, but rather for him to hear about it from other patients. That opened up space for more honest conversations between us where I didn’t have to downplay what I was feeling.
I also had to learn to ask for help and be specific about it. Saying “I’m tired” wasn’t always enough. Saying “Can you handle dinner tonight? I don’t have the energy to cook or clean” helped him know how to support me. Over time, he began to see the patterns. He noticed the signs of fatigue. He learned how to show up, even in the smallest ways, which made a big difference.
It wasn’t always perfect. There were hard days. Days of misunderstanding, impatience, and fear. But every conversation brought us closer. And the more I let him in, the stronger we became.
Living with PNH doesn’t mean giving up on connection. In fact, it’s made ours more intentional, honest, and compassionate.
If you’re trying to help your partner understand your journey with PNH, start small. Share what you feel, not just what’s happening. Let them walk beside you, even if they don’t fully understand the road. Because love, when rooted in empathy, can carry you both forward — together.
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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