Over the last eight years, I was diagnosed with two chronic illnesses. Both times, the diagnosis turned my world upside down. With celiac disease, I had to change everything I ate. With the extent I now had to monitor my food’s cross contamination, I didn’t know how I’d ever travel to a non-English speaking country again (or even eat out in my hometown). Then, it was endometriosis. I woke up from surgery to find I had one of the top 20 most painful conditions in the world, and there is no cure.
However, in that same time span, I’ve visited over 30 countries. I lived abroad for three years. I climbed to the base camp of Mount Everest, swam with manatees, and made friends around the world. I fully recognize the privilege that has allowed me these experiences, but I also know that this life wouldn’t be possible without a drive to overcome the challenges with which my body has presented me.
For anyone else with a chronic illness and a desire to see the world but a fear of how your body will cope: I want to tell you that it’s possible. I’m not saying travel will always be pretty, or pain-free, or turn out exactly how you’d imagined. But you can still see the world and take care of yourself at the same time. Here are some of the tips for traveling with a chronic illness that I’ve learned along the way.
Sort out doctor’s appointments and medications in advance
If you have a chronic illness, chances are you go to the doctor a lot. Personally, I have two teams of specialist doctors that I have to travel over an hour to see. I also see a physical therapist weekly when I am home. The sheer amount of appointments can make scheduling travel feel impossible.
It’s true: travel takes a lot of planning, especially for if you’re part of the chronic illness community. You need to notify your doctors of travel plans, schedule appointments strategically around your departure and return dates, and even develop therapy goals in line with your travel plans.
Depending on the length of your trip, you may also need to ensure you can pick up extra doses of any medications ahead of time. If you travel with durable medical equipment (DME), you should contact your airline to verify their policies before flying: most permit DME regardless of luggage restrictions. The same goes for food: if you have celiac disease, diabetes, or food allergies, you can show a doctor’s note at TSA and travel with pre-packed food. You can also order special meals on most airlines, though you should keep in mind that they are not always prepared in dedicated facilities.
I recommend getting this process started two to three months before a long trip.
Bring your tools
I’ve found that routine is my best friend when it comes to managing chronic illness symptoms. Unfortunately, between time zone changes, air quality differences, and even differences in the way water is treated around the world, traveling can throw your whole body off its normal routine. While you can’t 100% avoid a flare, as chronic illness isn’t always predictable, I find there are some things I can do to maintain routine.
I highly recommend identifying the symptom-management tools you use at home and taking these traveling with you. What makes you most comfortable during a flare? For me, this means I travel with an infrared heating pad, pain relief cream, loose clothes, multivitamins, spearmint tea, lavender essential oil, gluten-free toaster protection packets, a physical therapy wedge, and of course all my medication. I also bring gluten-free translation cards along if I’m traveling to a non-English speaking country. Everyone’s “tools” will look different depending on your condition and preferences, but having them on hand in a new environment is invaluable.
Travel with supportive people
As a person with chronic illness, I hate feeling like a burden. Sadly, I’ve found I’m more likely to feel that way if I’m traveling with people who don’t understand that I need to pace myself or adapt how I handle day-to-day activities for the sake of my health. Instead, I can’t emphasize enough how important it is to travel with supportive friends, partners, or family! And if you don’t have any supportive travel-lovers in your life, it’s totally fine (and maybe even better for you) to travel alone if you’re able. I have traveled with both unsupportive and highly supportive people in the past, and the difference in not only my travel experience but my health has been massive.
Keep in mind that it’s not totally on your travel partners to be supportive, though. Before the trip, be very clear about your needs. Express your concerns, how you’ll need to adjust activities, and why you need to do this. Chances are that if they care about you, and truly understand your condition, they will be more than happy to help advocate for you along the way.
Traveling with someone else who also has a chronic illness can also be very empowering. Whether or not you have the same illness, chances are you can relate to, support, and advocate for each other.
Flip the narrative
As a final note, I encourage you to flip the narrative you may have ingrained in your head about living with chronic illness. Those of us with chronic illnesses are always told the things we can’t do: I can’t eat gluten, some days I can’t even walk due to endometriosis pain, and I can’t ever be cured.
But chronic illness isn’t all negatives. Thanks to my chronic illnesses, I’ve become a stronger person. I have empathy, and I have confidence in myself to overcome obstacles, because I overcome seemingly insurmountable obstacles every day. Earlier this year I trekked to the base camp of Mount Everest. Whenever I began to struggle, I reminded myself of the pain I’ve had to overcome and live with daily due to endometriosis. I made it to base camp and never felt stronger.
In travel, as in many situations in life, true strength comes down to our mental outlook. So even if your body doesn’t always cooperate, remember how strong chronic illness has made you. You deserve to see the world, and you can do it in a way that works for you.