To travel with a chronic illness, pack caution and carry courage
Preparation and self-advocacy enable me to enjoy trips with PNH
Travel has always fed my soul. There’s something magical about exploring a new city, tasting different foods, or just watching the sunrise from someplace unfamiliar. But since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, traveling has taken on a whole new meaning — it’s no longer just about adventure, but also about careful planning, self-awareness, and grace.
I used to book trips on a whim. Now? I double-check flight times against my infusion schedule. I make sure I have enough medication packed, plus extra, just in case. I carry a printed copy of my diagnosis, a list of prescriptions, and emergency contact information for my hematologist. It’s not how I used to travel, but it’s how I have to now — and I’ve come to accept that.
Before every trip, I have a conversation with my doctor. I’m lucky that my hematologist is incredibly supportive. He doesn’t make me feel like I’m fragile or limited. Instead, he helps me navigate this life with both caution and freedom. We talk through risks, plan around treatment, and he reminds me: “You can still live fully — just thoughtfully.”
Long flights are tricky. With PNH come many symptoms and the risk of blood clots, so I wear compression socks, walk the aisles, and drink water like it’s my full-time job. I’ve even learned how to kindly explain to seatmates why I keep getting up — because invisible illnesses require visible self-advocacy.
One time, while exploring Colorado with my family, I felt more winded than usual. The altitude hit hard, and I had to slow down. That trip reminded me that flexibility is essential. I let go of the idea that I had to “do it all” and instead focused on what I could do, like laugh with my family at dinner or rest while they played. That’s travel, too. That’s living, too.
It’s not always easy. Watching others hike mountains or dive into packed itineraries can bring on a twinge of grief. But I remind myself: I’m still showing up. I’m still creating memories. I just do it at my own pace, and that’s OK.
To anyone with PNH dreaming of traveling: Don’t let fear stop you. Prepare well, know your body, and lean on your medical team.
Resources that have helped me include the Aplastic Anemia and MDS International Foundation and the National Organization for Rare Disorders.
The world is still yours, even with PNH. Just take it one intentional, empowered step at a time.
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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