How I Vacation With Acute Hepatic Porphyria

I refreshed the Lyft app on my phone as the speakers behind me blared music from the beloved animated classics of my childhood. I eased my body onto a relatively dry strip of concrete and continued my day of waiting.

That morning in February 2020 started earlier than my body typically liked to function, as we joined the swarms lined up to enter Disney’s Hollywood Studios. Despite the excitement of securing spots on each Star Wars Galaxy’s Edge experience, I felt progressively weaker and in more pain. I appointed myself to “line duty,” which allowed my family to explore the Black Spire Outpost, and enabled me to stand still for a bit. After an hour of waiting, we flew the Millennium Falcon on a smuggling mission, and then I bowed out of the park before hitting a wall.

Acute hepatic porphyria (AHP) prevents me from being as active as I’d like day-to-day, but it’s a particular challenge on vacations, when I’m out of my comforting home environment and asking more of my body. Every time I go away, I have to pack my rare disease, and it can be problematic. Fortunately, in recent years I’ve learned to make modifications so AHP doesn’t dictate every decision of my getaways.

A series of unfortunate vacations

On our last family trip, I left the fun of Disney World because I knew the consequences of vacationing on someone else’s terms. I’ve learned the hard way over the years. There’s that time a hike in the Rocky Mountains cost me three days of my life. Then there’s this other time I napped through sets at the Austin City Limits music festival because the flight down to Texas drained my energy.

Perhaps my all-time favorite memory is when I threw a tantrum in the Fort Collins pedestrian mall. In a fit of “painger,” I raged against my concerned partner, demanding we eat a nice meal out despite being too exhausted to enjoy it. While we laugh about it now, that incredibly awkward dinner ultimately served as my wake-up call.

In the moment when porphyria strikes, it is devastating and can be terrifying in its severity. Yet when I look back at memories of unfortunate vacation moments, it’s clear how each could have been prevented.

How to vacation with porphyria

While I can’t always control how my body will respond to stressors like air travel, schedule shifts, or increased physical activity, there are plenty of vacation variables I can control.

Following is a list of spoonie-friendly considerations I take when traveling.

• Timing: Flares and attacks coincide with my monthly cycles, so I plan my trips for off weeks.
• Medicine: My symptom patterns fluctuate with environment changes, so I pack more than what I typically require. For instance, nausea and anxiety are not symptoms I treat regularly, but I pack for both!
• Medical plan: Before I take any significant trips, I ensure my hematologist is on board. We make a crisis plan that identifies nearby care facilities. I also pack emergency room materials, including treatment guidance and documentation of my genetic diagnosis.
• Napping accommodations: Energy limitations are critical considerations of trip planning. I may just need to rest for a few minutes, whether it’s on a bench, in the passenger seat of a car or in an actual bed.
• Itinerary: Pre-porphyria, I crammed everything I could possibly do into the days I was away. Now I think of my trips as a highlight reel, only planning for the must-sees and padding extra rest time in between.
• Communication: It’s critical my travel companions understand they may have to roll with my body’s challenges. Even my closest friends are unaware of the impacts AHP has on my day-to-day, so I ensure we are on the same page before we finalize plans.

Although depressing in the moment, my vacation horror stories are teaching moments. Each allowed me to learn a new way to take my power back. Through realistic planning and self-compassion, porphyria no longer rules my vacations.

When I hugged my lightsaber-laden family farewell, I focused on the rest I could give my body and not the fun I would surely miss out on. I chose self-care. Besides, a string of photo texts allowed me to follow along on their adventures while resting on the couch with HBO and Thai delivery.

I love traveling to faraway lands, and it’s still possible to do so, but it requires building trust with my body. Being open to schedule maneuvering and compromising my to-do list for my health has enabled me to enjoy some wonderfully modified trips.

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Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.