I have always loved the idea of travel, the concept of escaping normal, daily life and seeing new things. When I was diagnosed with chronic illness, the underlying passion never changed, but it certainly made things more complicated. Through the years, I have learned a lot about how to prepare for travel in a way that sets me up for success and to truly enjoy myself rather than feeling miserable and anxious while away from home. I know many of my fellow chronic illness warriors are hesitant to travel because of the complexity it requires, but I hope this helps at least one person take a step towards exploring the world. We deserve to have just as many amazing, life-changing experiences as anyone.
*disclaimer - this post contains affiliate links to products I have personally purchased and tested. If you purchase these items through these links, I receive a small commission, at no extra cost to you.
Packing - checked luggage:
Make a list, check it twice! Making a packing list ahead of time makes the last-minute packing so much less stressful. Use a notepad on your phone, or a physical pen & paper if you’re a stationary junkie like me! I find it most helpful to make separate categories within my list, especially if the trip entails different activities that require different items, for example: medical supplies, travel day, day at Disney, competition days, beach day, etc. Check things off as you pack them, and then when you’re done packing, go back through the suitcase and cross them off once again. You’ll feel much better heading out the door if you know you have every last thing you could possibly need.
Packing cubes are a must! Depending on the trip, I use packing cubes either by category, or by day! A packing cube may have all my pajamas/loungewear, or it may have a full head to toe outfit for a specific day/outing (example: a packing cube with my mouse ear headband, my Disney shirt, an undershirt, a pair of shorts, comfy walking shoes, a pair of socks, and my fanny pack - everything I need for my day at Disneyland all in one place)
If you are packing for a longer trip or maybe just packing more bulky items, consider using compression space saving bags! They come in 2 versions: one requires a vacuum and the other you can just roll the air out of. This saved my life when I went on my recent ski trip and needed ALLLLL the bulky snow attire!
Try not to over stress about forgetting simple day-to-day items! For the majority of trips, you’ll be able to stop at a store once you get to your destination, if you need to. Priorities: Make sure your prescription medical equipment is in your carry on, don’t forget your drivers license & insurance card. If you forget a toothbrush or some shampoo, just grab some when you get there, no biggie!
Plan ahead for hydration! There are a ton of hydration options out there these days, but my favorite and go-to is Liquid IV! I love the variety of flavors and the packets are so small and lightweight, it’s super easy to bring with you wherever you go. I usually get some 16.9oz water bottles at my destination (see below for grocery delivery suggestions) so that I can make up a quick, cold bottle of liquid IV when I arrive, and a few times each day! I also love and use these strawberry lemonade packets from pedialyte!
Packing - carry-on:
Always, always, always pack your daily medications and other medically-required items in your carry-on. Traveling is stressful enough, and the last thing you want is to arrive at your destination with a missing suitcase full of medications. I love using this pill container, and also frequently use these disposable bags to group meds together by when I need them! (AM, PM, bedtime, etc.)
If you require medical fluids, sharps, or other equipment that usually isn’t allowed on an airplane, pack all of it together in a completely separate carry on: think a duffle bag, small suitcase, or backpack. This bag will be allowed in addition to your “normal” carry-on, and the airline cannot charge you for it if it only contains medical supplies. If it has a mix of medical supplies, clothes, personal items, etc, the airline can charge you for bringing it on board. I love using this duffle because it slides onto a suitcase handle very easy and securely, and when I’m headed home with less supplies it rolls up and becomes super compact!
If you have a prescription for these items or if they are labeled with your name and date of birth, leave it on! I’ve never been asked to verify that the items are mine or that they are medically necessary, but I leave those pharmacy labels on just in case.
Make sure to pack multiples of medical items that you know you’ll need. For example, if I’m planning to do just one port access & infusion while I’m away, I’ll pack 3 port needles, 3 dressing change kits, and at least 3 microclaves & caps. I get my port accessed just fine on the first try 99% of the time, but the last thing you want is to be at your destination and stressing because you only have one chance to get it right. I’ve never ever used 3 needles in one sitting, but I will feel better knowing there’s no pressure.
Make sure your carry-on has any items you might want to easily access on-board the plane. For me, this includes my nausea/motion sickness meds, motion sickness wristbands, my favorite essential oils, peppermint gum, my phone & ipad, my headphones, and of course a portable, mobile charger to keep everything all charged up! This kind is my favorite because it can charge two devices at once, and it also can charge my phone about 4-5 times before it needs to be recharged! I also usually bring some anxiety meds just in case - i’m a terrible flyer!
If you’re flying on a redeye or exceptionally long flight, consider bringing a comfortable travel pillow and maybe even a small blanket. I use both of these styles interchangeably. It takes up a bit of space, but you’ll be so thankful when you’re comfy cozy on the cold plane at 3am, trust me!
Bring an empty hydroflask or similar water bottle in your carry-on, and fill it up with ice water as soon as you get through security. I love this brand - more budget conscious and keeps drinks cold just as long! This, at least for me, ensures that I’ll have plenty of ice cold water for the flight, and when I get to my destination too! Plus, it’ll save you about $7 on airport bottled water, and its good for the environment, too! Many airports have self-service water-bottle filling stations these days, but if you can’t find one, just head to the closest coffee shop, bar, or restaurant. They’re usually more than happy to fill it on up for you!
If you struggle with chronic pain of any kind, I highly recommend packing a few refillable ice packs in your carry-on. They take up almost no room, contain no liquid, and in my experience the flight attendants are more than happy to fill them with ice for you.
Preparing:
The best favor you can do for yourself is to put conscious effort into making sure you will feel your best for travel day and for your whole trip. For me, this means scheduling an infusion either the day of my flight, or the night before for early flights. It is a time commitment for sure, but I want every shot at feeling good so that I can truly enjoy my trip. If you know there’s something you can do to help your body get ready - take the time and do it! Whether it is an infusion, drinking extra fluids, or getting some treatment for pain relief - your future vacation-loving self will thank you for it.
If you’re wanting some entertainment during your flight, download a few shows, movies, or podcasts onto your device while you’re still at home. Your airplane may have free internet access, but I never count on it!
Charge up all your devices - nothing worse than landing at your destination with a dead phone!
At the airport:
I have never required airline assistance such as a wheelchair, etc, but it’s available! You can visit this website 72 hours before your trip for more information on how to arrange assistance at the airport.
If you’ll be bringing an extra bag of medical supplies on board the plane, allow extra, extra time to get through security. In my experience, the procedures that TSA use to search your bag can vary widely airport to airport, and even trip to trip. Sometimes they just pull my bag aside, look through it, and hand it back, but sometimes they remove every item, swab & test all of the IV bags, and do a full-body pat-down. I never know which of these two experiences it will be that day, so I always allow enough time for either circumstance. Travel day is incredibly stressful, and you really don’t want to be sweating it out at security, thinking you might miss your flight.
At TSA, declare any medical items you have with you. I’ll usually tell the agent something along the lines of “this bag has medical liquids and equipment, it will need to be hand searched!” Sometimes they pull it aside just then, but sometimes they’ll go ahead and run it through the x-ray anyways and then do additional screening afterwards.
Be strategic with that carry on - if you do pack a carry on with medical equipment & a mix of other personal items, be advised that the TSA may remove and search every single item - any clothes, etc must be searched in addition to the medical stuff. If you do throw anything in with those medical supplies, consider a bulky pair of shoes or something that won’t take forever to get tucked back into the suitcase when the search/screening is done.
On your way to your gate, stop at the first restaurant you see to get that water bottle filled. Hydrate, Hydrate, Hydrate!
If you’ll need special assistance or accommodations for boarding the flight, stop by the gate agent desk and let them know how to help you. They can only help if they know, so don’t be shy!
At your destination:
Take some time to unpack and settle into your hotel, airbnb, or wherever you’re staying. You’ll feel much more relaxed if you feel at-home vs living out of a suitcase/mountain of clothes!
If its available where you are, I 10/10 highly recommend ordering a PrimeNow delivery through Amazon or a similar service. You can even get it all set up before you arrive and just click order once you’re at your destination. Order groceries that you know you like, bottled water if you need it, and any other essentials that you didn’t pack or forgot to include. I always order some “safe” foods that I know I can eat even on the days I feel the sickest - crackers, applesauce, toast, etc. I always hope to feel well enough to eat all kinds of vacation food, but it takes some stress away if I know I have the option of eating light, too.
If you’re traveling with a group, be sure to communicate your needs and/or restrictions. I used to always be too shy to bring anything up, but would end up feeling physically terrible because I pushed myself too hard. Don’t be afraid to speak up if the group hike is likely to almost kill you - you’re better off staying back at home base and enjoying a good book or movie. Your friends will understand, and they’ll be glad to have you feeling your best for the rest of the trip.
Overall, in my opinion, the benefits of traveling always outweigh the risks and the stress. I have a huge increase in anxiety leading up to every single trip, and every single time I have to talk myself into going. Once I’m there, though, I find myself wishing I didn’t have to go home. With the appropriate preparations and organization, traveling with your chronic illness is more than possible - it’s necessary. Get out there. See the world. Make memories. You may have to travel in a different way than other people, or with some restrictions, but the world is yours. Get out there and enjoy it.