As a caveat, I should add that this does assume you are already doing pretty well with pacing, nutrition, etc. If you’re not already on the ball with all of that in your day-to-day life, in my opinion you’re going to struggle with regular travel as part of your work life.
Also, I do not have any GI-related symptoms, so I can’t speak to any tips for managing that side of EDS while travelling.
Note: Some of the links are Amazon affiliate and referral links for products that I use and like enough to recommend, I have made it clear where that is the case. I get a few quid if you purchase through the links but if you prefer not to use them, just search for the name of what I'm linking to and that will find you the relevant product!
Travelling
Probably the biggest challenge for me is the physical act of getting from one location to another and not falling apart in the process.
It’s taken me a lot of years to get to a place where I can fairly confidently know that I will be able to be a functional human being at the other end of a long distance trip. Here’s some things I put in place to make sure that happens.
Take the best class you can afford
It’s not possible for many of us to travel business with lay-flat beds, but I would suggest travelling the best class that whoever is paying the bill will cover.
In my case, this usually means travelling Economy or Premium Economy, but I always upgrade to an extra leg room seat, either with points or by paying to book the seats.
Note that you can’t sit in the exit rows if you are not physically able to assist in an emergency, and I wouldn’t recommend them anyway as they do not recline at all in virtually every plane I’ve been on which makes for a pretty uncomfortable trip.
Book a seat that best suits your needs
I find getting up and standing on long flights to be really important, so I will usually either book a seat with a lot of space (e.g. a bulkhead seat) so I can get up and down easily without bothering fellow passengers, or an aisle seat where I can easily stretch my legs, and can get up whenever I want.
Sometimes I do prefer to have a window seat though, as I can lean against the bulkhead (and see out of the window!). It just depends on the length of the flight and how much I think I’m going to need to be up and about.
Also think about how far down the plane you want to be. If you suffer with any kind of motion sickness, it’s usually recommended to be as close to the front of the plane as you can to minimise the effects of turbulence. I try to never be further back than the wings.
If you’re sensitive to smells, don’t sit near the toilets or the galley (which can also be quite noisy at times), both can become quite bothersome on longer flights.
Book assistance
If you can’t comfortably walk about a mile or stand for more than half an hour, I would highly recommend that you book assistance at the airport. Even if you can, you might want to consider booking assistance anyway.
Some airports have very long walks from check in/security to the gates, and you will often be standing in line for long periods of time.
I can currently manage this, but in years gone by there is no way I could have managed to stand for that long or to walk the length of the airport to get to my gate. Even now there are some trips where I end up wishing I had booked assistance because I'm just totally exhausted after all the walking and standing. I'm usually that person who just sits down on the floor in a long queue!
Book assistance! They are there to help you and I’ve met some lovely people along the way!
When you have assistance booked they can help you get through security quickly (fast track) and also get you to the gate.
The down side is unless you’re using a self-propelled wheelchair of your own, you’ll often be in a pushed wheelchair and have someone with you throughout the airport. It’s not so amenable to doing shopping and whatnot! Sometimes I’ve had folks who would take me to an area (e.g. departures lounge) and pick me up again at a specified time/location to take me to the gate, other times I’ve had folks who have been more than happy to help me with my shopping and getting something to eat! Sometimes they also just take you to the gate in a motorised buggy and then you're free to explore. It really depends on the airline and what support you need as to how it will work out.
Figure out what aids you need
For many years I travelled with my Trekinetic K2 wheelchair. I could take it directly to the aircraft door which meant I was fully independent in and around the airport terminal right up until departure. I’d pick it up on arrival at my destination. If you are travelling with a wheelchair always make sure you have full international insurance cover which will include hiring a wheelchair in your destination if you incur any damage during flight.
Nowadays I don’t need mobility aids, but I do need a coccyx cutout cushion and a back support for longer flights (over about 4 hours is my max without additional support). I have memory foam ones (this one - Amazon affiliate link).
Almost every flight I take long-haul will allow you one carry-on and one personal bag. I put my laptop etc in my personal bag (rucksack) and anything I don’t mind checking into the hold into my carry on (a suitcase). I keep the stuff to a minimum in my carry-on suitcase, and put the cushion and back support on top of my stuff. Due to the memory foam, they squish down pretty well.
When I check in I always ask if they would like me to check in my carry-on. If the flight is busy they are usually all too accommodating and will check in your carry-on for free (and some airlines will give you priority boarding as a thank you). I keep a large tote bag in my rucksack, and take out my cushion and back support to carry in the tote bag until boarding.
I strongly recommend you always wear compression socks on any flights over an hour or so (but consult with your medical professional on this). I have some socks that I use for running which I wear on flights, or the regular travel compression socks you can buy in many places also work well. If you struggle with POTS you may also want to consider if it would help you to wear compression gear (leggings, top) as well. It’s worth trying it out to see if it helps you, you can always take them off if it doesn’t! I make sure I have two pairs - one for the outbound trip, and one for the return. Saves you having to wash them, but if you're able to get laundry done this might not be such a worry.
What would help you to sleep on the flight?
For me, I need a blackout eye mask (I have this one - Amazon affiliate link), which is pretty much complete blackout and noise cancelling headphones (I have the Sony WH-1000XM3 - Amazon affiliate link). I can't cope with having in-ear headphones for any length of time, so for me, over ear headphones are a must.
I also recently started using the Trtl Pro neck pillow (Amazon affiliate link) which is a total revolution. I have tried loads of different neck pillows but this one has been super helpful. It’s a bit like having a partial neck brace, supporting your head and stopping you from dozing off with your neck in a wonky position. Well worth the investment for the tweaking of the height that you get with the Pro version, but I’ve heard great reviews of the regular one (Amazon affiliate link) too.
Sometimes I find it helpful to take a Melatonin tablet (check with your medical professional first) as we board the flight, and I also sometimes take a Pukka Nighttime tea bag to have in-flight instead of coffee/tea.
Plan your pain control
Make sure you keep on top of your pain control during long flights - this might mean setting an alarm to wake up at certain times. Timezones can be a real challenge with keeping your meds on time, so be prepared for how you’re going to deal with it to avoid over/under dosing.
You might well need to use some step-up painkillers on the flight depending on how things go, so make sure you have everything you need in your hand luggage.
If you have anything other than over the counter meds (eg paracetamol, ibuprofen), or are bringing large quantities of any drug with you, always make sure you have them in clearly labelled prescription packaging, and ideally take a doctor's letter with you. This is especially important if you are taking any medications which might be banned or controlled substances in the countries you are travelling to / through.
Make sure you take enough medication in your hand luggage to cover (ideally) a week, but at a minimum to cover 2-3 days. In the event that your hand luggage is the only thing you end up with at the destination (e.g. if your baggage misses a connection) it’s much less stressful to have everything you need to be well in your hand luggage until you’re reunited with your baggage.
Dress for comfort
It’s really important that you dress for comfort on long flights.
Personally I never wear tight fitting clothes like jeans - my belly swells during flights and they become uncomfortable.
I wear a smart pair of walking trousers and comfortable shirt, with a hooded zipped jacket. The hooded jacket comes in really helpful when it gets cooler in the evenings on long haul flights as I can put my hood up over my head for added comfort. I also usually pack some warm socks!
Layers are the name of the game - especially if you are going from cold to warm countries or vice versa.
I also highly recommend clothes with decent (preferably zipped) pockets. When travelling I’m always having to find pockets for phones, passport, boarding card, hand sanitiser, mints, etc. and a zipped pocket means you're less likely to lose things!
Organising your schedule
Planning rest time
Over the years I’ve learned that I can’t expect my body to do a long haul flight in economy classes, and then slam straight into being a functional human being as soon as I arrive.
If this is required of me, I will have to travel business class so that I can properly rest and allow my body to relax during the flight. Even then, I still need at least half a day to acclimatise after arriving.
As a result, I always insist that I have at least 24 continuous hours after arrival at my hotel before I have to do anything. Ditch the guilty feeling already, it's what you need to function, so it's what you need to request.
I also know that after a period of intensity, I will need a full day to rest, no doing, just being able to be horizontal and rest, before I have to travel anywhere else. For example if I am running an event for several days, I plan in a day without anything at all - no touristing, no hanging out with people, just a complete rest day.
This is something that I just can’t compromise on. The times I’ve tried to get into meetings or events sooner or fly home directly after an event, especially with transatlantic flights, have resulted in epic flare ups and complete energy crashes. It is just not worth it - the time it takes me to recover from the crash far exceeds the extra day to rest.
I also try to make sure that I am within walking distance of the hotel, sometimes I just need to make a quick exit and rest for a short time which is so much easier if your accommodation is nearby.
Be careful with your physical training
I often forget just how physically demanding it is to travel long haul, and to be on the go under quite an intense situation for several days back to back, often on my feet most of the time and traipsing around a city going out for dinner. Late nights, early starts, and all that jazz.
While I always bring my gym kit with me, increasingly I am finding that I just can’t train in addition to what I’m demanding of my body to get me through the things I need to do during the day.
Be careful with this, it’s easy to push yourself to maintain a training plan and push yourself over the edge of what you can tolerate.
Sometimes I will switch up my usual training for a pool session or an easy bike ride, or just do some stretching and mobility in my room.
I always bring things like resistance bands with me so I can at least move my body a bit if I don’t make it to the gym!
Adjusting to timezones
I find this is more of an art than a science, and over time you’ll figure out what works best for me.
Generally I struggle most going from East to West, and find it harder to re-sync my timezones when I’m going in that direction.
I always try to switch my timezones as soon as possible regardless of how long I am going to be staying, mainly because I try to maintain a waking-with-the-sun routine.
Things I find useful to help with this:
- A good eye mask you can wear all night without any discomfort
- Earplugs in case you’re in a noisy hotel!
- Melatonin
- Pukka Nighttime Tea!
As I always have 24hr before I need to be a functional human being, I usually go with what my body is telling me and sleep when I need to sleep.
On this trip I was travelling for about 30 hours by the time I got to the hotel due to various delays, and I was so completely exhausted I couldn’t even function, so I had to sleep right away. I managed to wake up mid-afternoon, do a bit of work, and then stay awake until early evening. This allowed me to go to sleep properly in the evening, and I managed to reset my timezones pretty swiftly.
Nutrition
For me, one of the big challenges in some destinations is getting enough to eat. I’m fully vegan for ethical reasons, but also I am very allergic to dairy products. It’s not always easy to get a properly balanced diet when travelling, so I have to take steps to make sure I have a fallback.
For me, Huel (referral link - gives you £10 off your first order) works amazingly well for this. It’s a full meal replacement, fully vegan, and just needs water to prepare (in some locations you will need to use bottled water - always check water safety).
When I am travelling for a week or more, I take a full 1.5kg bag of Huel Black with me, and one or two shakers.
I also take a stash of at least one protein bar per day with me, so that I have something to nosh on if I need a snack in between meals.
Some events I’ve literally lived on Huel the entire time for all three meals because there wasn’t enough on offer that I could eat. This is perfectly safe and never leaves me feeling hungry, in fact I’m usually more energised!
If you’re travelling to a particularly hot country, you’ll also want to be thinking about electrolyte replacement especially if you have POTS.
You might want to consider something like Tailwind (referral link - gives you £2.50 off) to keep you going - it’s always worth having a few of their stick packs in your bag in case you happen to get a tummy bug or food poisoning as it allows you to rehydrate fully and take on board carbs in a tummy-friendly formulation. These can also be used as a full nutrition source (I used Tailwind pretty much exclusively over 24 hours when running my ultramarathon).
Buffer weeks
Something that I have taken on since the pandemic has been having buffer weeks before and after travel, where possible. These are weeks where I try to minimise external engagements and only take on absolute must-do things, with the caveat that I might have to cancel them. This helps me to limit my exposure to any bugs before I leave, and also means I can try to keep my schedule a bit quieter in the week after I return.
Sometimes I am totally fine after a phase of travelling, but sometimes it wipes me out and I need to go into hibernation mode to recover enough spoons to function. Purposely turning things down in that week due to my buffer week means I am giving myself permission to rest and recover if I need to.
Conclusion
I hope this has given you some helpful tips if you're facing traveling long distance for work with EDS or any kind of disability. Much of my experience has been learning as I go, so I'll try to keep this updated with any other learnings! Please do leave a comment if you have any tips you would like to share with readers, or if any of the above have been helpful!
