How To Travel With Lupus

Since becoming sick with lupus, I travel far less than I used to because the act of traveling is difficult due to the fatigue I live with everyday. Thirteen years and a lupus diagnosis later, my old method of traveling sounds both exhausting and impossible.

When I was in college across the country from my hometown, I would fly home during school breaks. As a broke student, I’d always buy the cheapest flight. This often meant boarding a plane at 5am and spending my three-hour-long layover wandering through a random airport. Because I didn’t own a car and the earliest train from my school to the airport left after my flight boarded, I sometimes spent the night in the airport. I’d take a late train to the airport, find a bench in a well-lit area to sleep on, and set my phone alarm for an hour before boarding.

I’d arrive at home a bit tired, but with plenty of energy to eat dinner with my family or my boyfriend.

But despite lupus, I’ve been privileged to visit some amazing places. I went on a trip to London with friends a few years ago. I also traveled to Salem, MA on a solo vacation last year. I thoroughly enjoyed both trips and still love exploring new places. While I will always need to space out my trips and vacations, I find that if I stick to the following rules, I can travel and still stay healthy.

Healthy traveling rules

Be aware of and honor your physical limits

Most lupus patients keep a mental list of which activities trigger their joint pain and fatigue. More physical activity than usual, like walking long distances, increases my level of fatigue. Being in a moving vehicle also causes nausea, which for me, can last an entire day. When buying flights, I try to purchase a direct flight without layovers in order to minimize travel time and so that I don’t have to walk to multiple terminals. If I’m driving, I pack plenty of snacks to settle my stomach. I spend a lot of time planning the logistics of my trip. My fatigue is at its worst in the morning and I also need to go to bed on time in order to not be sick the following day. Because of this, I make sure my flight is in the middle of the day. I also board the plane early when the flight attendant calls for disabled passengers. I find that if I approach the flight attendant before boarding and explain that I have an invisible chronic illness, they are accommodating about allowing me to board right away rather than stand in line for long periods.

Pack extra medication in case you have to stay extra days

Even the most careful plans can go awry. Events outside of your control, like an airline workers’ strike, a maintenance issue with the plane, or your car having mechanical problems could mean that you might be stuck at your vacation destination for longer than anticipated. A snowstorm or hurricane might hit, making traveling home unsafe. For this reason, I always pack more medication than I need. I also include emergency medication, like steroids or anti-nausea pills. If I’m feeling especially nervous, I’ll ask my doctor for a script that I can use at any pharmacy, even if it’s not my regular pharmacy.

Stay somewhere where you have control over your environment

When planning my trip, I always book a single hotel room or stay with someone who I trust to respect my physical limitations. My best friend across the country in Seattle keeps the house quiet in the mornings because she knows I need to sleep in. She also stocks the fridge with food I can eat, like coconut or almond milk because I’m lactose-intolerant. Communication and trust are the keys to staying healthy on vacation when you’re traveling with someone else. I never assume that a person I’m traveling with, even if they’re family, automatically knows when I need to rest, stop for food, or avoid certain activities. I’m clear about communicating my needs and I only travel with people who I trust to listen.

Give yourself time to recover from your trip

While a vacation is restful and restorative for most people, it can be tiring for lupus patients. Since becoming sick with lupus, I no longer see vacations as restorative. Instead, I think of them as adventures. With careful planning, I can explore different states or even countries and make lifelong memories. The relaxing part of the vacation happens at home when I give myself a few days to rest before returning to regular life.