Top 8 Tips for Travelling with a Chronic Illness
(Plus items I can’t travel without)
Tips:
Know your limitations. Pick an itinerary with a lot of breaks
Make sure your travel partners understand your limitations. That means saying no sometimes.
Pack for your worst day
Pick comprehensive travel insurance that allows for preexisting conditions
Bring a wheelchair or a power scooter
Join a Facebook group and find accessibility tips and devices for your diagnosis
Try out devices BEFORE you travel, and if they are small enough, buy double
Prepare to spend extra time speaking with vendors to explain your needs…unless you hire me 🙂
My packing list for POTS
Since developing POTS and Gastroparesis on my honeymoon cruise in 2022, I have gone on one cruise (more on the way) and multiple stateside vacations—from beach trips, concert festivals, to cabin stays in the Appalachian Mountains. Every new adventure teaches me something new about my chronic illness and how to navigate life in a world designed for able people. I have learned a lot of first-hand lessons, and today, for my first official post ever, I would like to share some of these lessons with you.
POTS (Postural Orthostatic Tachycardia Syndrome) is a type of dysautonomia. In other words, it stems from my body not being able to regulate its autonomic nervous system. There are multiple reasons why this occurs in multiple people. It could be caused by an accident, genetics, or (like me) induced by a virus. Some symptoms include being unable to regulate body temperature, fatigue, and a high heart rate upon standing. Gastroparesis is also thought to be due to the autonomic nervous system. My body isn’t able to digest food at a normal rate, which translates into awful GI issues and a weird intolerance for certain types of food. It’s not like I can say, “I’m allergic to gluten.” My body can tolerate one food one day and then despise it the next. Some people with Gastroparesis can tolerate things I can’t, and vice versa. Some people with Gastroparesis barely have any symptoms, while others have to rely on a feeding tube.
Chronic illness is a broad term covering many disabilities and needs. Even my diagnoses can vary wildly among different individuals. Thus, some of these “tips” may not apply to you. You may also find that some of these tips do apply, even though you don’t specifically have my type of chronic illness. My tips largely stem from my symptoms of fatigue and mobility issues, so if you do not suffer from that, I apologize. I wish I could include tips for every chronic illness out there, but that would be the length of an encyclopedia.
1. Know Your Limitations
I would very much like to go on a three-month itinerary around Europe where every day I’m in a new city, but by day two, I would be feeling like that deep-fried fish-stick-looking sea creature in a wheelchair from SpongeBob. It is so, so hard seeing a vacation you dreamed of doing when you were little, only to realize that your body can't do it. It’s okay to grieve. Living with a chronic illness means sometimes grieving the life you could’ve had. It’s a legitimate loss.
But please don’t push yourself. There are many alternatives out there that can accommodate breaks throughout the day (like cruising). Find one that fits where you are now.
2. It’s Okay To Say No
Here’s how travelling with my extended family usually goes. They plan a trip. I agree. Halfway through that trip, they decide to do something spontaneous, like hiking or kayaking, or going to a place with more than one flight of stairs. Everyone agrees, starts to head out the door, and then I get to be the party pooper and say, “I can’t do that.”
Silence. Disappointment. A grumble. The thought of leaving me at the hotel for the day whizzes about the room before they realize that no, that’s an awful thing to do. They plan something else. The awkward exchange replays over in my head all day.
It sucks to feel like the bad guy. But it’s not your fault for not being able to physically do things. Invisible illnesses are invisible. Speak up for yourself. Don’t assume that your family or friends will know all of your limits.
3. Pack For Your Worst Day
What is the worst flare you ever experienced? Pack like you are going to experience that during a ten-hour flight to Europe. For me, I usually get my worst flares when I’m sick. That means I’ll pack a lot of meds I typically use when I’m sick (decongestant, Tylenol and ibuprofen, anti-nausea, throat lozenges, antivirals (if you can get access to them), etc.). I also pack masks, COVID and flu tests (I suggest Metrix for COVID since it works better than rapid tests), and….
4. Buy Comprehensive Travel Insurance that Allows for Pre-Existing Conditions
Travel insurance has saved my vacation more times than I can count. It allowed me to stay an extra few days in Italy when I developed COVID on that ill-fated honeymoon in 2022, and it paid for my impromptu experience with the Italian medical system. However, not all insurance is equal, and not all insurance will pay for claims involving pre-existing conditions like a chronic illness.
I recommend Allianz. Certain top-tier plans can allow for pre-existing conditions, they have a network of over a million doctors around the world to choose from, there is a telehealth option, 24/7 support, and everything is easy to use and right in the app.
5. Bring a Wheelchair or Power Scooter
This is part of preparing for your worst day. Even if you don’t usually use a scooter or wheelchair at home, you will desperately want it when you’re staring down a mile-long pier in eighty-degree heat while trying to get to your group excursion in Mexico.
What type of wheelchair and power scooter is right for you? That depends on your vacation type, the destination, and you. I can help you figure it out.
6. Join a Facebook/Reddit/Social Media Group and Find Accessibility Tips and Advice
Most of the things I use daily or bring with me on vacation, I learned about from some forum online. It’s also a great place to ask questions and learn about trips other people have taken with your specific chronic illness. A good idea is to look up subreddits with your chronic illness in the name or search your chronic illness plus “travel” on Facebook pages.
7. Try Out Devices BEFORE You Travel, and If They are Small Enough and Likely to Break, Buy Double
Skip to #9 to see my personal packing list.
8. Prepare to Spend Extra Time Speaking with Companies or City Officials, Unless You Hire Me 🙂
When you don’t use a wheelchair all of the time, you may not realize how inaccessible everyday places can be. You will also find it hard to find someone who can tell you how accessible or inaccessible your destinations are. Is the city sidewalk cobblestone? Can your scooter fit in the cabin door? Does public transportation have a wheelchair lift? And what if you are allergic to dairy, and the only restaurant within walking distance from your hotel is Dominoes? Prepare to be on hold for a few hours to find out.
If you’ve ever travelled with a chronic illness, you will know that it takes a lot longer to plan a vacation than people who consider themselves able. Most people find it frustrating. If that’s you, then why not have someone do all of the hard work for you? I can book, confirm your accessibility needs, and make sure they are met from the time you get to the airport to the time you come back home.
And because I’m a former librarian, I actually find this kind of research fun!
9. A List of Doodads I Pack That Help Me with My POTS and Other Chronic Illnesses While Travelling:
In no particular order. I am not sponsored by any of these products. I just use them.
Compression Socks (The only ones that have worked for me without breaking the bank.)
Stuff for Tummy Troubles (antacid, Gas X, MiraLAX to Go Packages)
Electrolyte Mixers (I usually use LMNT, but I am currently trying to find an alternative.)
Personal Fan x2 (This is the highest powered personal fan I tried. I bought two for extra battery life and in case it breaks.)
Cane With Seat (For medium distances when a scooter would be impractical. I can’t find the one I bought, but this is similar.)
Rented Scooter
My FitBit (although I would like to eventually buy the Visible arm band)
What interesting things do you bring on your vacation? Do you have any tips to share? Leave a comment below! And don’t forget that I open for bookings in June!
Want to join me on my next cruise? For a short time, you can book any Brilliant Lady sailing out of NYC and receive a free stay at Virgin Hotels the night before departure. Hurry, the offer can end at any time! Click Book Now or send me an email.
Thanks so much for the post! I am a big proponent of the neck fans. I would add an easy to carry power bank so you can charge the neck fans.
Also, Dr. Chilly is well worth the investment, imo. It doesn’t condensate, and you can refreeze it very quickly using only cold water. Life saver on hot days, for sure.