Tips for traveling with fibromyalgia (and other chronic illnesses)

Last Updated on 1st January 2019 by Sarah and Justin

Erin is our latest guest author on the topic of accessible travel. Erin writes a humor blog about being a mom while living with fibromyalgia and some other conditions thrown in there for fun. She doesn’t travel often, but recently went on a trip to Colorado and learned a lot about what it’s like traveling with a chronic illness (or three). Even though Sarah has a completely different condition, she can very much relate to all of Erin’s advice (and Justin fully endorses the “travel light” tip!). We hope you find her tips for traveling with fibromyalgia helpful as well. 

Erin’s dos and don’ts for traveling with fibromyalgia

When you aren’t versed in traveling, the simplest trip can be a study in anxiety and unaccounted for emergencies. Throwing in a disability or chronic illness gives it National Lampoon potential. BUT! I did it. I really believe that with the right preparation and willingness to be flexible you can do it too. There are just a few rules that need to be observed.

I’ve never traveled much. A couple of family trips and one wedding on Catalina Island was the sum total of my travel experience. But when your bestie calls you up with plans to go to the mountains in the middle of summer, you don’t say no. It’s against the Geneva Convention. So I read up on traveling with chronic illness for the sole purpose of not being miserable for the entire vacation. I suppose I could mention that I suffer from fibromyalgia and a few other health issues that decided to come along for company. I have to rigorously safeguard my energy to get through all the human stuff I have to do in a day, and I try to teach others to do the same. There’s not a lot of me to go around, but I try to be up for new challenges if only to keep things interesting.

Well, it was interesting. It was one of the best weekends of my life. Nothing my illness could throw at me could overwhelm the wonder of the experience. If you have the chance to travel, don’t let your illness be a buzzkill. Just don’t. Speaking of which, here’s a list of travel dos and don’ts.

DO dress in layers

There’s no way around it. You can be in a rain forest one minute and the Andes Mountains the next. That’s right. Not only do you have to deal with temperature spikes and dips that you have no control over, but humidity also plays havoc with more than just your hair. I swear the next time I hear a healthy fashion plate gripe about what humidity does to their ‘do, I’m going to throw a bottle of ibuprofen in their general direction. Humidity makes the chronically ill body curl up like a three-day-dead roach, complete with feeble, automatically kicking legs. I can’t handle changes in temperature. Either I freeze and shatter or turn into a useless mushy pile. I’m basically a stick of butter. So knowing this, I made every outfit a matter of layers that could be chastely pulled off or piled on at need. It’s so important that everything be breathable. The cotton council may have dubbed it the “fabric of our lives,” but they would have been smarter to use the slogan “the fabric that keeps you from turning into Swamp Thing.”

My first plane trip was so cold I thought I was going to have to break off my own popsicle arm and take a swing at the flight attendant World Series style. My second trip, the cabin felt like the inside of a high school gym locker after shower time and smelled about as awesome. Fortunately, I had lots of layers to take off before I got soaked in sweat. I’m pretty sure it made the couple next to me uncomfortable when I started to disrobe, but you gotta do what you gotta do, you know what I mean? They should be grateful I kept my shoes on. Here’s another powerful tip that you can have for free: at several stores including World Market and Dollar Tree, you can purchase a real southern-belle style folding fan. Yeah, I know it might look a little weird, but you know what else looks weird? Puking in one of those airsick bags before the plane even takes off because you’re overheated. I’ll jiggle a fan in my face, thank you, and that’s MISS Scarlett to you, Mr. Butler.

DO pack light, light, light

I’m the kind of person who always likes to pack extra of everything, or at least I was until I got sick. When you’re sick, extra is, for the most part, just extra. Have a small budget for buying any incidentals you might need when you get there. Just ask yourself when you pack something into a suitcase, “do I need this bad enough to want to lift it?” Don’t check baggage if you can help it. There are tons of videos online about how to take a trip with just a carry-on and personal item. You can last for a surprisingly long time with an itsy bitsy amount of luggage, and I’m saying this as a girly girl who’s so extra she wears bows in her hair. It took a little creative arranging and there MAY have been a return-journey dirty laundry explosion in the middle of Denver airport, but I was able to tow and lift it without too much drama.

DO take care who you travel with

Make sure you can stand them for the whole trip. Make sure they are okay with traveling with a person who needs special accommodations. Communicate about it beforehand. Tell them they might be stuck waiting with you while you recuperate or go through the congressional process that is finding a wheelchair. Remind them that you may not be able to spend each day running from one fun activity to the next. Even one activity a day may be stretching it depending on your level of function. If you want to take it to the next level, have them push around a 50 lb sack of playground gravel in a wheelchair everywhere they go for 24 hours. Make sure they constantly hand the sack a bottle of water and reassure the sack that they don’t mind canceling plans. If they can handle that as long as the gravel sack has something funny to say, go ahead and book the flight. If not, I’ve heard pet rocks make charming traveling companions.

DON’T travel somewhere too populated

I mean unless it’s really on your bucket list. Then, don’t let anything stop you. But for me, bumping into a thousand people every few steps would be agony. Visiting somewhere like New York or Tokyo would be out of the question for me even if Adele DOES accept my application to be her buddy. Even going to the museum on a field trip day is a little out of my wheelhouse. I knew that wherever I went, it would have to be out of the way and off-season. Colorado in summer fit the bill, and I was pretty much able to find a place to sit everywhere we went.

DON’T let yourself get worn out

You are going to want to push yourself. You’re going to want to overtax yourself. You may even wake up feeling so good you think you can handle more. DON’T DO IT. Please don’t misunderstand me, if an opportunity comes up to do something you really want to do, I’m not saying you should let it pass. I am saying that you need to think about how you will recuperate and get the level of rest that you need to recharge from that activity. Think hard about what activities exhaust YOU. Not someone else with your same diagnosis, YOU. For me, long periods of walking and crowded areas are draining. For you it might be cold temperatures. Or stupid people. Think about your day to day activities. Try to remember what caused your last big collapse. How do I know you’ve had a big collapse recently? Oh honey, I know.

Read next: accessible travel tips from frequent travelers

DO request a fan or heating pad or extra pillows at the hotel and DON’T feel guilty about it

Most hotels, even the budget ones, will accommodate requests like this, and it does NOT make the staff hate you. Being a jerkface makes the staff hate you. If you’re sweet about it, they’ll bring you anything you want. Leave a tip for housekeeping when you check out of your room and all will be well. The ease and enjoyment of your days will depend greatly on how well you sleep at night. Anything that makes sleep deeper and easier is well worth a little extra trouble and niceness on your part. Don’t talk yourself out of things that will make your sleep more comfortable. This is your trip; make sure you’re awake for it.

DO speak up for yourself

This is similar to the above, but remember it everywhere your body takes you. Now honey, you don’t have to be one of those annoying people that has to announce it to everyone in ear shot. Good Lord, I wound up on a shuttle with one of these people and it was about all I could take. She had an incision on her knee. That’s it. It was approximately the length and width of a crumb of short-grain rice. This did not stop her from yelling loudly at every person who so much as existed in her line of sight, “Excuse me I have had knee surgery and I can’t move my leg please don’t touch me!” My friend Jenn said I looked like I was about to set the bus on fire. I didn’t. I was nice.

All this nonsense is not necessary to make people aware that you have different needs. Even if your illness is invisible, most of the people you encounter (especially those on the clock being paid for professionalism) are good with a simple explanation. “I have some health problems” was usually enough for me to get the accommodations I needed. I’m aware this is not always going to be the case, because some people are mean. But my point is, if that harpy on the bus was getting obliged with kindness and concern, you can reasonably expect to ask a flight attendant to lift your bags into the overhead compartment.

Some closing thoughts

I also know there’s a lot about traveling with a disability that I’m not fit to speak on, like how to handle being wheelchair-bound or how to ensure you’ll have the appropriate medical facilities in the event of an emergency. But sometimes being just sick enough that it doesn’t show can be its own special kind of drama, especially when you have to rely on the kindness of others to function. I’m more equipped to discuss this part of the chronic illness world, and I hope that I at least gave you a little bit of confidence. Like, wow, if this neurotic basket case can handle a bit of travel, maybe I can too. What can I say? I’m a giver.

About Erin

Erin is a nurse, a mom, and an interested observer of her own body. She currently lives in Houston where she, her husband, and her parents all take care of each other’s chronic illnesses. She also homeschools her son Alex (age 15), her daughter Jasmine (age 6). If you want to read more, check out her blog, The Chronic Mama. You can also follow her on Twitter, Instagram, and Facebook.

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