Whether a seasoned traveler or someone who very rarely ventures outside of their zip code, traveling can pose some stressful and challenging scenarios for both the everyday Joe and the patient who has MCAS or other types of chronic illness.
Growing up in Alaska and having all relatives living in the “lower 48,” I got accustomed to traveling at a young age. As my health declined, I still found that the joy that travel provides far outweighed the difficulties that it can bring. In fact, I found great healing in travel, both physically and mentally.
Now don’t get me wrong, I’ve had my moments… and there were definitely several years where I was not very stable for travel. But I’ve found that in the face of my fears and anxiety, my pre-conceived notions and assumptions about travel often turned more into “that wasn’t such a big deal after all” moments. And a steady dose of being stubborn has influenced me here too… I felt that if I didn’t continue to go out of my comfort zone, travel could turn into a “use it or lose it” scenario, similar to my perspective on exercise.
Perhaps I’m a free spirit, but for me, there’s nothing more liberating than a backpack, a one-way ticket, and a new country to explore. I’ve had friends ask me how to travel abroad on a shoe-string, as well as how to travel while living with chronic disease. For the sake of today’s ramblings, I’ll address the latter question. I’m going to focus on air travel since that’s so common, but obviously a lot of these principles can apply to traveling on boats, trains, buses, donkeys, etc.
My Top Travel Tips for MCAD Patients
- Know Before You Go
Research hospitals and medical clinics before you go so that you have an instant plan in case of emergency. Nowadays, patients can also reach out to local support groups on social media to learn more about resources (or even make local contacts) before they go. Learn some basic phrases if you’re going to a destination where you don’t know the language. (For example, “Emergency medication” and “I need to go the hospital.”) Look into whether travel insurance is a good option. (Though in my case, the only time I tried to use the insurance was when I was in Indonesia. Monkey attacks are apparently not covered… go figure!) Research vaccinations and infectious diseases to the area (Caution here: don’t freak yourself out! But it’s good to have a basic idea, even if you are not able to tolerate vaccines.) Be aware of the local food and water considerations (when in doubt, always use filtered or bottled water, even for brushing your teeth, and default to fruits you can peel or other items that are less likely to cause food-borne illness). Consider carrying a medical summary letter of your conditions, medications, emergency plan, etc. Research transit options for when you arrive (in advance) to decide what may be the best fit for your needs. Before booking, don’t be afraid to call and ask hotels or AirBNBs or hostels when they were built, whether they have a pool, and other details that may help you determine if they have triggers (such as mold, off-gassing of new carpet, etc.) Prioritize your itinerary but remember to pace yourself; sometimes less is more. Look into local holidays and aim to time the trip away from stressful times or seasons when you are more flared. (I recently was reminded not to travel abroad right after I visit my nieces and nephew because I inevitably get sick!) Some MCAS patients do better in the heat vs. the cold; some prefer to rent a car while others would much rather use public transit; these are all important factors to consider when electing your destination and deciding when to go. Having a travel buddy can also help tremendously if that’s an option.
- Pack Like a Wise Man (or Woman)
Bring your own laundry detergent that you know you can tolerate. (I like to travel with a little thing of Dr. Bronner’s liquid multi-use soap.) If there are certain types of sunblock, shampoo, or other toiletries that you know you do well with, be sure to bring those to minimize flare-ups from exposure to other products. If you react to laundry detergent, consider bringing your own sheets, a light sleep bag liner, and an inflatable pillow or pillowcase. Consider a scarf with a secret pocket or a money belt for valuables to reduce the concern of getting mugged. Avoid the temptation (and stress) of having to purchase food during the journey and bring lots of snacks that you’ve tried before without issues – the “safe” foods. Pack some easy-to-make meals in your luggage too if you have significant dietary restrictions. Consider bringing extra immune-boosting supplements or vitamin C, especially during cold and flu season. Many people also wipe down their tray table and arm rests with disinfecting wipes and use hand sanitizer liberally for extra precaution, as a minor illness can really tank the system of immunocompromised patients. Don’t forget the reusable water bottle (stay hydrated!) and medical alert jewelry!
- Pre-Arrange for Special Needs
Pre-arrange any services you may need, such as wheelchair transport. Consider TSA Pre-check if you travel often. Consider early boarding at the gate. Know your type of seat preference (I prefer the aisle seat!) and also consider catering the entire itinerary to your needs (for example, several shorter flights vs. one long one, or morning vs. later in the day).
- The Early Bird Gets Less Anxiety
Checking in online (even if you still have to check a bag) always eases up some of the pre-airport anxiety. Arriving EXTRA early helps too (much to the annoyance of my partner! Ha!)
- Pre-Medicate, Bring Extra Stashes, and Make Adaptations
Always bring a first-aid kit, emergency meds, and extra everyday meds/supplements, and be sure to stash all of the above in a few locations in case one bag goes missing. Pack as light as possible (given the key necessities, of course). Many patients find that pre-medicating with their typical regimen of antihistamines, leukotriene inhibitors, or other options creates smoother sailing. Imagine all possibilities and adapt for certain scenarios. (For example, if you suffer from severe constipation and typically perform enemas in the morning, consider other travel-savvy alternatives like a suppository that is easy to carry and use when needed. Be sure to try out any adaptations multiple times before you go, so you’re comfortable with it and know you won’t react to it.) It’s also super important to go easy on yourself and allow self-care time and deviations from “the plan” when needed. Pace yourself as you would at home and be ok with that. (Traveling with companions who “get it” can really help here.)
- Communicate Well
When you board, tell the flight attendant right away if you have severe food allergies or odor sensitivities, and where you keep your emergency medications. If you end up having to sit next to someone who is wearing a strong perfume, cologne, or reeks of cigarette smoke or another trigger, check in with the flight attendant and ask to switch seats right away. If allergic to nuts, you can also ask if there is a “nut-free” section of the plane; some airlines now have different seating zones that factor in nut allergies. If they are not able to allow you to move seats, don that Vogue mask and take some deep breaths; this too shall pass.
- Get in The Zone
This is my favorite part; I secretly enjoy weirding other people out. When I roll up into the airplane, I look ridiculous but tend to go into isolation mode. I wear a hat, noise-cancelling headphones, a respiratory mask, and either blue light-blocking glasses or an eye mask. I get up every hour or two for a little walk, and once I land, I like to do some barefoot grounding or yoga in the grass to diminish the EMF restlessness. Pre-downloading some calming podcasts and music playlists can also be nice to reduce anxiety on board, but sometimes I do best with heavy-duty earplugs to block out as much as possible. Bottom line – find what works for you and set yourself up for success.
- Your Mindset Matters
Expect things to go wrong, embrace spontaneity as much as possible, and remember that many moments that start as travel blunders later turn into really cool experiences that you would not have had otherwise. Travel is such an incredible exercise in letting go of control. Don’t be afraid to ask for help. Do your best to get rid of any sentiments of entitlement, judgment, or comparison. Keep an open-minded perspective. A lot of people around you most likely have special medical needs that are (often) invisible, just like yours. Know that you’re very possibly going to have to walk through the perfume zone of the duty-free store to get out of the airport. Expect that, at some point, your Uber driver is going to have ten cherry-scented air fresheners hanging from his dash. (Also, I feel like the more I stress about things, the more I seem to be a magnet for the chain smokers and perfume wearers.)
Over the decades I’ve had some pretty “entertaining” experiences from airplane travel… everything from a ruptured eardrum and tornadoes to a 16-hour flight to Australia (where the reading light and movie screen didn’t work) to the time they sprayed insecticide inside the plane in Africa…while we were on board. In all of these instances, at some point I had to make a decision about whether I would let something outside of my control affect my mindset and ability to continue adventuring.
My advice for you is this: focus on the positives, the joy, the little novelties, the change of scenery, and embrace the beauty instead of focusing negatively on the adaptations that you must go through in order to function. It’s all about your perspective. The biggest regrets you’ll have in life may very well be the trips you didn’t take, so on that note…
Bon voyage! Buen viaje! Arrivederci!
Have any travel tips? Please share them below in a comment!
