How I prioritize my health while traveling with chronic illness

A columnist shares how she prepared for a recent trip to New Jersey

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by Brandi Lewis |

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Planning a trip and traveling somewhere new can be exciting, but also overwhelming. I have to ensure I’ve packed everything, planned a fabulous wardrobe, and tied up any loose ends before my departure. My two chronic illnesses only add to the stress of travel.

Being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia forced me to make adjustments and find a “new normal.” Before the age of 19, I lived a normal life, with fewer fears and big hopes for the future. My diagnoses made me more cautious and constantly remind me that my health is my top priority. This is especially true when traveling.

I recently flew to New Jersey, a trip that brought back memories of flying to New York to visit my PNH specialist. I was gracious to have travel assistance for my first trip to meet my doctor, but wearing a mask at the airport pre-COVID-19 invited many stares. The looks burned, as if people were fixing laser beams on my mask, identifying me as patient zero.

In getting ready for my New Jersey trip, I sat on the floor with my suitcase open, ready to be packed. I started to think about how I was going to stay safe and germ-free on the flight. As my mind swarmed with thoughts, I outlined my list of priorities for traveling with chronic illnesses.

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How I’ve managed the physical effects of my chronic illnesses

Minimize germ contact

I wanted to stay healthy on my trip, which meant avoiding germs as much as possible. Unfortunately, the constant hustle of numerous visitors means that airports and airplanes tend to be packed with germs and bacteria. Stocking up on hand sanitizer, masks, disinfectant spray, and wipes gave me peace of mind.

Plan ahead

It was crucial to plan ahead to ensure I brought everything I might need on my trip — especially my PNH medication.

Listen to my body

During my trip, I checked in with my body often to see how I was feeling. I’d ask myself, “Am I experiencing any pain?” As my mind ran through my list of symptoms — fatigue, shortness of breath, rapid heartbeat — I became aware of any tender points or throbbing.

Because blood clots are always a concern for me while flying, I made sure to check in once the plane had reached its cruising altitude. It can be hard to move around on a flight, so I monitored my body for any tightness in my chest or legs. Moving around and massaging my legs every so often helped to ease my mind.

Let my caregivers know how I’m feeling

I’ve made it a habit to check in with my family while traveling. After I landed in New Jersey, my mom texted me to ask, “How are you feeling?” This opened a dialogue about any health problems I was experiencing.

Being able to share my health status honestly and easily with my caregivers gave us all peace. It helped them carry out the important task of caring for me, and in turn, I received great advice and a safe place to speak freely.

Prioritizing these tasks allowed me to keep my health and safety top of mind during my trip. And because I was prepared, I was able to relax and enjoy my getaway.

What are your top priorities when traveling with PNH? Please share in the comments below.

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.