Traveling with Chronic Illness: a Guide

Updated: Nov 8, 2019

My best friend Maryann and I love to travel, especially together. We’re both Sagittarians, extremely extroverted, and make new friends wherever we go, intentionally or otherwise. Back when we were both dyeing our hair the same shade of Little Mermaid red, we were known as “Maryann and Ginger.” This is us in Hawaii in 2015:

Two women on a beach

After that trip, though, things started to change. Maryann’s energy took a sudden nosedive, to the point where some days she found it impossible to move. At all. As in, reaching over to turn on a lamp became an epic struggle, and the idea of getting out of bed by herself was laughable. This was Chronic Fatigue Syndrome at its most acute.

After passing out behind the wheel of two successive vehicles, she stopped driving altogether. Doctors were mystified. Those closest to her were terrified. Our favorite firecracker was essentially housebound, and nobody had an explanation.

Me visiting Maryann in the hospital

Four years, multiple hospital visits, and a slough of specialists later, we now know that Maryann suffers from a life-threatening chronic illness called Hypopituitarism, which was triggered by brain injuries sustained from childhood physical abuse.

She is dependent on synthetic Cortisol to stay alive and functional, and the fallout of that dependency has caused a number of equally awful secondary conditions such as severe digestive problems, sudden weight gain, edema, and osteoporosis. Her bones are now as frail as an 80 year old’s and she is currently wheelchair-bound due to multiple spinal fractures.

She finally has a team of incredible doctors on her side, but only after years of fighting to be taken seriously by the medical community. I can’t tell you how infuriating it was to watch one of the most honest, integrity-bound people I know being continually dismissed, discharged, and written off as a nutcase, a liar, or a drug addict looking for a fix.

As in so many of these stories, the illness illuminated for Maryann who her true supporters are.

The bulk of her family, still unable to confront the reality of their collective trauma, shut her out, claiming she was making it all up just to hurt them and banning her from family events.

Many of her “friends” simply disappeared, unwilling to take on the added responsibility of helping her stay alive. But those of us who remained were privileged to watch her overcome obstacle after obstacle, and discover exactly how strong she really is.

Maryann in Greece with cane

Yes, traveling is more complicated for her now than it once was. And yes, she has learned the hard way that she must be extremely careful about her choice of travel companions as well as accommodations, because spending time around people who don’t understand, or don’t care to understand, her condition is not just ill-advised, it can be life-threatening. But with some care and planning, she is still able to enjoy exploring new places.

With Maryann’s help and permission, I’ve put together this short guide to help special-needs travelers like herself to continue exploring their world and getting the most out of life. I hope it helps you get out there and thrive!

Tip 1: Stay with people who care (and arm them with information!)

When we were in Hawaii together, we stayed in two different accommodations. One was a vacation rental, and one was a hotel. The vacation rental was run by a management company and we never saw a representative in person. They were not terribly responsive, and I know that, had there been an emergency during that time, we would have been completely on our own, in an unfamiliar place.

Likewise, when we were at the hotel, though there was ostensibly an entire staff of people whose job it was to make sure our needs were taken care of, we noticed that they were not particularly diligent about accommodating special requests, even when they were health-related.

For example, they frequently forgot or simply ignored allergy-based modifications when we ordered room service. And when we tried to get information on the detergents they were using on the sheets due to a mysterious skin rash she developed during our stay, they told us that information was “not available” to guests.

Though we eventually sniffed out the answer with the help of a friendly member of the housekeeping staff, we were, needless to say, disappointed by the hotel’s non-response to our inquiry.

Maryann in Germany, with cane

This is an all-too-common experience for travelers with special needs. Large hotels are simply too large to keep track of individual abilities and make special accommodations, and vacation-rental owners are often off-site and their homes ill-equipped to accommodate differently-abled travelers.

Localitists, on the other hand, are perfectly poised to accommodate unusual requests, since they are very hands-on and focus on one guest, or small group of guests, at a time. You just can’t find that kind of flexibility and focus in any other venue.

Now when we travel together, Maryann and I exclusively book with localitists we’ve taken the time to get to know ahead of time to make sure they are well-informed and genuinely interested in helping us enjoy our experience in their city. That way by the time we show up, they are emotionally invested in, as well as fully prepared for, the adventure ahead. 

Tip 2: Take It Slow

We’ve never been big on whirlwind tours, and usually prefer to stay in one city for a minimum of three days so as to really get to know the place and make some solid connections before moving on. But even so, we’ve had to slow down our usual pace even further and schedule in rest days after any significant exploration.

That’s not just for Maryann: as a frequent companion I can tell you that pushing a wheelchair all day or helping someone negotiate stairs, etc. on a cane takes a toll on one’s stamina as well. And you know what? It’s been wonderful. Being forced to stay still for longer and take a slower pace in our exploration means that we get to know places even better and make more solid connections than ever before. 

It also means we’ve had to stay very flexible and stop booking much of anything beyond accommodations in advance. Since we never know where her energy level is going to be at on any given day, we just take things one day at a time, waking up and deciding what feels like a good match for her energy in that moment. It’s honestly incredibly freeing to ignore the itinerary and just be where we are at any given time. 

Tip 3: An Ounce of Prevention

Though we’ve tossed out the pre-booked tour packages and rigid itineraries, we still do a metric ton of advanced planning for each trip. We’ve become true artists at anticipating possible stressors and preventing them in advance. 

First, we let Maryann’s doctors know she’s going to be traveling and ask for extra medication during the trip, as well as any advice they may have. I’m always amazed at the things they think of that would never have occurred to us. For example: make sure both you and your companion have on you at all times a written document explaining your symptoms, listing all your medications and dosing schedule, as well as contact information for your doctors.

Next, we sit down and think through the entire trip, start to finish, making note of any potential friction. Finally, we do everything within our power to minimize that friction by notifying others of our needs well in advance and packing or locating a place to purchase whatever we think would help.

For example, if we will be flying, we always notify both the departure and arrival airports in advance of our itinerary and of Maryann’s needs. We’ve even gone so far as to print out maps of the airports we’ll be visiting and circle all the places to buy supplies if needed. Same with train stations and car rental locations: they can’t offer extra help if they don’t know you’re coming.

We always pack snacks and water, of course, but also extra medications in case of a delay or an emergency situation. We also make sure we have a germ-filtering mask and hand sanitizer for Maryann to prevent contamination from other passengers (her immune system is basically shot). Often we decorate the mask, for example with a cat nose and whiskers, to make it more fun (and fashionable!) for her to wear it. 

Ninja mask

Or a ninja mask. Whatever works for you!

We also schedule in plenty of extra time whenever there are transitions, such as transferring from one airplane to another or traveling from our accommodations to the airport or train station.

And of course, we make sure we are always dressed comfortably, have plenty of sunscreen and/or wide-brimmed hats on, and that we have at least one well-charged phone between us. An external charger is an absolute must-have, since a dead phone battery means no way to access ride-sharing apps or call for a ride, get reminders when it’s time for Maryann to take her meds, or call for help in an emergency. 

We are still learning as we go, of course, and would love to hear from other special-needs travelers with advice to share. Please share your story and your best travel tips in the comments, below. Safe travels!

#Chronicillness #friendship #portfolio #travel

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