Public travel is a stressful experience, especially if you live in a busy city or frequently travel internationally. What makes it even more painful (no pun intended) is travelling while having a chronic illness. I love going to new places and meeting new people, but I hate thinking about how I have to get there.
I asked spoonies on social media to share their tips and advice on the best way to travel with a chronic condition.
Plan ahead! Start early, take your time and avoid as much stress as possible.
When flying, I ask to pre-board with my service dog. I find it helps to find a kind flight attendant to be friends with too. There is always someone who will go the extra mile to help out if you ask nicely. Plan ahead too! Know the airports you’re traveling to and find the shortest route to your gate, the exit, the bathroom, or whatever else you might need.
Service/support dogs! They will bring physical and emotional support, and it’s so much more fun to travel with a fur baby! People don’t always know this but you can also have an emotional support cat, bird, there are so many options. It’s not just dogs.
Bring a fellow human to love and support you! I bring my partner and he helps me when I can’t do physical things, helps me when I can’t focus, and snuggles me to sleep.
This one is one of the most important! Big, long, loose dresses! The absolute most comfortable thing to travel in.
Snacks, snacks, snacks! You’ve got to keep that energy up! Make sure you have a lot of them if you are on a road trip in the car. And tons of water!
Planning! Also always check places’ policies e.g if you’re going to an airport where you will be standing for long periods you can either get a wheelchair or express processing. Same goes with venues who will give you preferential seating so you don’t have to stand. The biggest tip is know your limit. If you end up pushing yourself too much during your traveling, you won’t get to enjoy your destination!
Plan, plan, plan. For me, even if it’s as simple as going to work, I have to make sure I have the alarm set the day before right to the minute. I have to check that the alarm is actually working a few times otherwise I get anxious and keep an aroma scented hand cream too as the scent helps calm me down. I keep painkillers, lollies, a journal, a pencil case, basically all the things that I can comfortably distract myself with.
Carry mints with you, it helps with dizziness/sick feeling and helps keep you calm when it’s busy!
We call ahead to the area and find out the most recently built hotel. This means less mold or other allergen risks. When I check into the room, I tell them about my Mast Cell Disease and Anaphylaxis risks. I tell them I’m headed up to the room and will sit in it and acclimate for 20-30 mins. If I feel reactive I will need to switch rooms. That way if it was a former smoking room, or has mold issues in the window air conditioning I can get something else before I bother unpacking.
I also bring a bag that has sterilizing wipes, bleach, paper towels etc and I go in and CLEAN doorknobs, light switches, the entire bathroom. So that I can settle down and have a safe environment. I also believe in bringing your own pillow/blanket due to dust mites and just general germs.
I think the number one tip is to LET THE STAFF KNOW your disease issues. In the states, we have protection under the Americans with Disabilities Act for appropriate accommodation and if they do not have adequate accommodation for me, I am allowed to leave without penalty or fee. Especially if I email or call ahead and have it noted that I am disabled.
Passenger assist at railway stations. I use them weekly for work all over the country.
Call TSA to discuss best way to transport medical devices that must be handy, particularly food.
Build in rest time! It can be especially hard if you’re not used to your illness or injury yet but it’s important to slip in twenty to thirty minutes more at least at every step of the way – not just in case your body isn’t as fast as you’d like, but in case of confusions or the need to just sit down for a bit and catch your breath.
Even if you’re traveling alone, it can be really helpful to have a buddy you can text or call or otherwise check in with each step of the way, whether to update or get pep talks or vent. They can also check in with you if they haven’t heard from you, to help you remember that you’re not in it alone. It can be a relative or friend you’re visiting or someone online from sources like this, but it will make the whole ordeal just a little less overwhelming.
This seems so simple but it didn’t come to me – don’t sit on the seats that are directly above the tires of the bus or in the very back end of the bus. The jostling and the vibrations of the bus really aggravated my nerve pain.
ThermaCare back heat patches. Tip: move it from the back to the front of your stomach if need to.
Know times of trains/buses so ideally if it’s on time, you won’t wait as long. Lysol wipes/sanitizer for germs! If it’s anywhere more than ten minutes away, snacks always. Headphones for sensory overload. Try to be the first one to get on so you can get a seat if you don’t have any type of handicap card.
So I’m blind as well as having EDS and POTS so it’s all in the planning. I use the internet to research the exact location of bus stops and look at Google Street View to look at my destination. I would say if you’re carrying anything weighty use a rucksack instead of a messenger bag and fill your pockets. On the note of pockets, sometimes you have to say goodbye to fashion and wear what you know will be comfy and practical. For me that’s jeans with big pockets. Have a grab bag of medication I use a medpack. It’s bright orange and fits everything in and can be found quickly if it’s urgent.
Think about posture if I’m listening to a book or something I can find myself sat on the bus leaning over on my rucksack like it’s a cushion. If traveling by train I set an alarm for 5 minutes before the train is due to reach the station I’m due to get off at. I position my bag so people can’t get in it easily and I sit back relax and go to sleep. Defiantly helps with spoon management even if it’s not a long deep sleep.
Drink lots of water, portable heat pads, snacks, an emergency plan. I love to travel alone but it’s not safe at the moment for me so having a travel buddy, resting/napping as much as possible, eye mask, earplugs, wheelchair for when I’m struggling.
Tub of salt, litres of mineral water, hot and cold snacks, thermos of tea, cushions! My partner drives me most of the time and I have a blue badge so I try and rest in the car too!
Bring a packed lunch so you always have guaranteed food you can eat if you have any intolerance or needs. Make sure you book an extra bag just for meds and medical equipment. You will never risk losing your meds if you lose your bag in the hold.
Make sure you also book assistance in the airports so they will take you to the gates you need to be at. Not only does that reduce the walking you’re doing it also reduces the stress you get from trying to find where you’re going.
I also wear the comfiest clothes known to man. Super soft jogging pants and a soft hoodie and tee no bra. Cozy socks and my ugg style boots. Also, an eye mask is a must so you can get darkness. Sunglasses for inside the airport is a great idea if you suffer from migraines brought on by certain lights like me.
In London the TFL website shows you accessible routes and you can pick how much walking you want to do, whether you can do stairs or escalators…also note they give free badges to disabled people that say please offer me a seat! Also if you have a walking stick make sure you stand in the middle of the tube carriage so everyone can see you and look for a seat even if there are none. This normally gets someone to offer you a seat.
Pack smart and pack light, use a comfortable purse or better yet a backpack, bring water and a health snack, plan your route and have it clearly written down for easy reference along the way, take the early bus to ensure you don’t feel rushed getting to your destination or if you miss your connection you won’t be late, always bring extra bus tickets, find a seat and close your eyes, meditate or practice mindfulness.
When you book your flight, make sure to mark off that you need wheelchair assistance. Be sure to state you have a disability and someone will push you all the way to your gate. You’ll usually get to skip the line at security or go into a much shorter one. You also won’t have to worry about getting lost. The person helping you knows exactly where you need to go. Always check a bag, it’ll lighten your load as you get around the airport. Strategically place items in your carry on for easy removal during security.
Bring snacks (salty and sweet) – everything is so expensive at an airport! And sometimes you need a certain type of snack to just keep you going. Stay hydrated, flights will dehydrate you. Always board early, it’ll help you get settled without feeling rushed.
And this one may seem obvious but plan ahead. Make a list of what needs to be packed. Know a day or two before what time you need to be at the airport, what time you need to leave, etc. Set reminders on your phone.
Be sure to have proper identification, itinerary, cash, etc. Pack medications into carry on. Consider using a carry on that you can wheel around. I prefer a backpack but that’s because I like to have my snacks easily accessible under the seat in front of me.
My best advice is to leave early. Don’t be afraid to ask help. With your luggage or anything. I know especially with invisible illnesses it can be hard to ask help, as people can wonder why you even need help. But from experience, I can say, that most people just help. They don’t ask anything, they don’t wonder anything.
Choose an aisle seat. If you need to get up to ease your comfort, you can do it without disturbing the person sitting next to you. It’s especially convenient when traveling during night time. If you would rather sit whole time, or sleep then choose a window seat, so you won’t get woken up by someone who wants to go to the toilet.
Note: Submissions have been edited for length and/or clarity
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