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The Mega Guide to Travelling With An Auto-Immune Disease

Five years ago I was diagnosed with two auto-immune diseases, and I've been trying to 'escape' from them ever since. As my fellow auto-immune sufferers know, these invisible illnesses in combination with the rigors of travel often make our symptoms worse. That being said, we can still take vacations we love, it's just that success hinges on thorough preparation. Dedicating time to plan ahead can alleviate pre-trip stress, and mitigate potential travel hiccups. So as someone who knows what it's like to muddle their way through a menu on the road, I wanted to share some of my tips on travelling with an auto-immune disease (and a few others for my guests with accessibility needs because we could all use a few helpful tips!)


travelling with an auto-immune disease

Pre-Travel Preparations


Initiate a conversation with your specialist or whomever is overseeing the treatment of your autoimmune condition. Whether your travel plans are work-related or for leisure, discussing your impending trip with your specialist is essential. They can provide tailored travel advice, offer insights on medication precautions and other pertinent considerations. Keep in mind, you may have to substitute or go without certain medications depending on the laws of the country you travel to. For those of us who suffer with inflammatory auto-immune conditions, it's important to let our specialists or primary care physician know what sort of activities we'll be participating in, the length of our flight, or any other aspect of our trip that may exacerbate inflammatory or circulatory conditions. Assess Your Current Needs and Limitations:

No one wants to think about what they can't do on vacation but let's find some workarounds. Start off by doing an honest evaluation of your present health status, taking into consideration both optimal and challenging scenarios. Are mobility issues affecting your ability to walk comfortably? Do you experience sensitivity to specific weather conditions like heat, cold, or dampness? Are there particular requirements, such as a specific type of mattress for sleeping? Or maybe you require medical aid devices for the every day. The more thorough you are, the better.

Understanding these aspects is crucial in determining the feasibility of your travel plans. Allow your current health condition to guide your choices, ensuring that your travel decisions align with your well-being and minimize the potential for exacerbating your condition.


travelling with an auto-immune disease

Take a Research Deep-Dive

Ugh, more research. Delve into comprehensive research about your travel destination to facilitate effective planning. Gather detailed information about various aspects of your trip, such as transportation, cuisine, climate, and local attractions. This knowledge will enable you to formulate a practical and informed strategy for managing your health condition while traveling. Consider taking the extra step of crafting a daily itinerary, which may include designated nap times and a list of activities for your family or friends to engage in during those periods.


Selecting the Right Destination

When deciding on your destination, consider the following tips:

  • Opt for a location with a climate that won't worsen your symptoms.

  • Explore all-inclusive resorts for convenient access to essential amenities.

  • Prioritize destinations with dependable and accessible local transportation.

  • If you anticipate requiring medical attention during your travels, opt for a location offering secure, reliable, and high-quality healthcare services.

  • Check if your rheumatologist is available for emergency calls outside regular office hours.

  • Opt for off-season destinations to minimize the stress of dealing with large crowds.

travelling with an auto-immune disease

Tailor Your Plans to Your Personal Requirements

Adapt your travel plans to cater to your individual needs, considering your familiarity with your auto-immune symptoms and triggers. Here are some key considerations:

  • Timing: Choose to travel during seasons that align with your well-being. If certain times of the year trigger flares, opt for periods when your symptoms are more manageable. If holiday travel stress exacerbates your condition, plan trips during quieter times.

  • Activities: Recognize your abilities and limitations when planning activities. While destinations like Disneyland or extensive museums may offer support with wheelchairs or scooters, the large crowds and expansive areas can lead to fatigue. Craft a realistic agenda that allows you to enjoy your trip without overwhelming yourself.

  • Mode of Travel: Consider the best mode of transportation for your needs:

  • Car: Ideal for those who prefer flexibility with frequent stretch breaks and a self-determined schedule.

  • Plane: If you're going international, you don't really have much choice but to fly. However, while air travel can be tiring with potential disruptions, advance planning, pre-boarding, and carrying essential items in your carry-on can enhance the experience.

  • Bus: Some buses accommodate travellers with mobility disabilities, but many destinations are still ill-equipped and don't make accommodations. Knowing which bus companies are accessible-friendly ahead of time is key.

  • Train: Amtrak and most European trains offer mobility accessible options, but comfort can vary. Research thoroughly, especially for train travel in foreign countries.

  • Cruise: Cruises can be suitable for limited mobility. Always verify with cruise lines or specialized travel agents to ensure they meet your specific needs.

By customizing your plans to align with your health requirements, you can enhance the overall enjoyment of your journey.


travelling with an auto-immune disease

Strategically Plan Your Accommodations

This is where most short-term rental platforms fall short; they don't provide accessible -friendly options. I almost always book hotels for my guests because they align with your requirements. Hotels can ensure accessibility by reserving an accessible room on the main level. It's also important to confirm the availability of a refrigerator for medications and snacks. Additionally, consider amenities such as a pool, hot tub, or on-site restaurant to enhance your stay.

Prepare for Potential Complications and Challenges

Sometimes, it all hit's the fan, no matter how perfectly you plan a trip! Travel often comes with complications and challenges, and the sooner you make peace with that, and do some preemptive planning, the faster you'll mitigate that stress. Take proactive steps (yes, some of these have been repeated, but I'm driving home the point):

  1. Schedule your trip during non-peak travel hours if feasible.

  2. Pre-arrange for assistance in advance by securing a wheelchair or other support between airport gates.

  3. Opt for non-stop travel to minimize long walks through multiple airports.

  4. Request an accessible hotel room on the main level, considering distances to amenities and planning accordingly.

  5. Inquire about hotel amenities, including refrigerators, and clarify rules for traveling with necessary items like medications and syringes.

  6. Obtain a doctor's note for your medications to address potential security concerns.

  7. Place identification cards in your passport, wallet, and travel documents, containing crucial information like your address, phone number, emergency contact, diagnosis, medical issues, physicians' names, and medications.

  8. Save an ICE (In Case of Emergency) contact in your cell phone.

  9. Contemplate wearing a medical alert bracelet, available at pharmacies, for added safety during your travels.

travelling with an auto-immune disease

Establish a Sleep Strategy

Prioritize healthy rest and sleep for a successful travel experience by planning ahead. If you struggle with sleep, consult your healthcare provider for a prescription for a sleep aid. Arrange for special pillows or blankets at your destination, or bring them along if needed. Consider packing earplugs and a sleep mask to enhance your sleep quality during travel. For international journeys, be mindful of potential jetlag effects on sleep and devise a plan to reset your internal clock, minimizing disruptions. For business trips, think about arriving a day ahead of meetings to allow time for rest and acclimation to a new time zone.


Travel Insurance I cannot scream this from the mountain tops loud enough: BUY THE INSURANCE. But to take that a step further, know precisely what you're covered for BEFORE you leave on your trip. Don't blindly book that trip thinking your credit card coverage will be enough, especially if you pre-existing conditions. Ensure preparedness for unforeseen circumstances by carrying multiple copies of all insurance information, distributing them among yourself and your travel companions to mitigate the impact of lost or stolen bags. Make sure your family and friends at home also have copies of your purchased insurance in case a claim needs to be started while you're in destination and you are incapacitated.

travelling with an auto-immune disease

Medical Preparedness Both you and your travel companions should be equipped to address medical needs efficiently. So let's walk through some key points:

Documentation Compile a document containing a concise medical history, a list of medications, insurance details, and contact information for your primary care physician and rheumatologist. Create several copies and distribute them to each of your travel companions, and remember to leave copies at home with your emergency contact(s). Medical Alert Obtain a medical alert tag or bracelet, and/or carry a card in your wallet featuring emergency contact and medical information. Emergency Contacts: Bring along necessary phone numbers, including those of doctors and pharmacists. Remember, if you suffer an in-destination emergency, the more information the attending primary care physician has when you're admitted, the faster and more effective the treatment. This is really important if you're sending your new graduate off on a gap trip - This is likely something they would never think to organize for themselves.

Local Medical Contact If needed, prearrange contact with a specialist or physician at your destination in case of medical emergencies. This is a great idea if you're going to be staying in one town for a long period of time.

Clear Communication Whether traveling with friends, family, or co-workers, proactive communication is key. Discuss your needs, expectations, and limitations beforehand. Address potential complications and establish a plan to manage them. Enlist the support of your travel companions, ensuring their understanding of your condition and providing them with information about your medications, insurance, and emergency contacts for reference


travelling with an auto-immune disease

Preparing for Your Journey to Your Destination

Packing for a trip can is a formidable task for the best of us, but it's particularly cumbersome when you're living with a chronic condition (especially when it's a condition where one of the symptoms is functioning with memory like a sieve!) The challenge lies in balancing the need to have everything essential while minimizing the weight of your luggage to alleviate stress. Here are some pointers for effective packing

  1. Suitcase Selection: Opt for a suitcase that complements your travels. Choose a lightweight option equipped with sturdy wheels. Use a suitcase that you can push, rather than pull, will conserve energy and alleviate strain on your hands and shoulders.

  2. Carry-On Considerations: When navigating airports, a carry-on bag is a necessity, but keep in mind that you'll be tethered to this bag throughout your journey. Anticipate the potential need to carry it over long distances, stand in extended lines, and stow it in overhead bins. Choose wisely; an over-the-shoulder bag may stress your shoulders and wrists. Instead, opt for a wheeled carry-on, a backpack, or a diagonally worn bag.

  3. Packing Light: Prioritize a light packing strategy, ensuring that you can manage your bags independently if necessary.

  4. Distribute the Load: It's advisable to have two lighter bags rather than one heavy bag. However, if both bags are intended as carry-ons, check the airline's regulations concerning carry-on luggage to avoid any issues.


Clothing:


  • Pack versatile, basic clothing that allows for layering and mixing and matching. Keep it uncomplicated, ensuring that your wardrobe can adapt to varying temperatures. Layers are essential for flexibility.

  • Shoes: Include at least two pairs of comfortable shoes suitable for walking and standing. Slip-on shoes, convenient for periodic breaks, are preferred by some travelers, particularly during airport security checks.

  • Support Stockings: Guard against swelling and blood clots caused by prolonged sitting by considering support stockings or compression tights. I cannot stress this ENOUGH! I nearly met my maker last year when I suffered DVT after a long flight. My legs were like balloons and the pain was unbearable. Please WEAR THE DARN SOCKS!

  • Travel Pillow: Enhance comfort during travel with a compact travel pillow that easily fits into your carry-on. It can provide support for your neck, lower back, or elbows.

  • Creature Comforts: Address your specific needs by bringing along items like a thin blanket or shawl, a special pillow, a neck brace, or warm socks.

  • Assistive Devices: If you require assistive devices such as a cane or walker, carry them with you rather than checking them in your luggage. Confirm with your airline regarding carrying a cane onto the plane, as most airlines allow it, but storage in the overhead bin is required upon reaching your seat.


  • Medications: Pack all necessary medications in your carry-on bag for easy access. Never, ever, EVER pack medications in your checked baggage, EV-ER!


  • Water Bottle: Bring a small, reusable water bottle to stay hydrated and provide water for medication as needed.

  • Snacks: Carry nutrient-rich snacks on long travel days to combat fatigue and avoid taking medication on an empty stomach. Options like nuts or dried fruits are convenient and don't spoil during extended journeys.


travelling with an auto-immune disease

During Your Journey - The Recap!

If you've diligently prepared for your trip in advance, it's likely to proceed smoothly; however, keep the following considerations in mind:

  • Stretch: Combat joint stiffness caused by prolonged sitting in a car, plane, bus, or train by taking regular stretch breaks. If driving, make stops every hour to move and stretch. For air, train, or bus travel, opt for an aisle seat and take breaks to move around.

  • Seek Assistance: Utilize available assistance, such as skycaps or porters. Request help getting to and from the gate, and don't hesitate to ask for assistance lifting your bag into the overhead bin—someone will always be willing to help. If you require wheelchair assistance, this MUST be prearranged when you are booking your trip and not when you arrive at the gate.


  • Use Assistive Devices: In settings like large airports, museums, or shopping centers, consider using a wheelchair or scooter for relief. Assistive devices can be invaluable for avoiding exhaustion when walking long distances or standing in lines.


  • Stay Hydrated: Combat body fatigue and additional strain by staying hydrated throughout the day. Dehydration can intensify the toll of travel, so prioritize drinking water.


  • Maintain Routine: Stick to a regular schedule for meals, medications, sleep, and movement. Strive to maintain a sense of normalcy despite travel disruptions to keep RA symptoms in check.

  • Pace Yourself: Plan a realistic and manageable schedule with regular breaks and rest periods. Avoid cramming too many activities or sights into a single day—spread them out for better endurance.


  • Sleep: Prioritize sufficient sleep throughout the entire trip, especially if crossing time zones. Adequate rest is crucial for managing auto-immune symptoms during travel.

  • Exercise: Stay committed to exercise even while traveling. Exercise becomes even more essential during trips to keep auto-immune symptoms in check. If you are able, walking is a reliable and accessible form of exercise away from home; consult the hotel concierge for walking maps if unfamiliar with the area.


  • Communicate: Be proactive in communicating with your travel companions. If you experience a flare-up of auto-immune symptoms, excessive fatigue, or any issues related to climate, activities, or food, speak up. Addressing concerns promptly is key to preventing escalation, so don't hesitate to communicate before problems worsen.


Whether you're travelling with an auto-immune disease, a chronic health condition or another visible or invisible illness or disability, travel is a bit more challenging for us. But that doesn't mean that we can't have the time of our lives, it just means we have a little extra homework. Let me know in the comments below if you think this guide will be helpful for your future trip plans?

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Author:
Jordana Manchester

Welcome to my passion project - the Storied Lands travel blog. Gather here for trip inspiration, stories, destination spotlights,  helpful tips, and thought-provoking discussions about important issues throughout the travel and tourism industry.

Posts on the Storied Lands Travel Blog may contain affiliate links which may result in a small commission generated from clicks that result in a purchase. Posts that contain such links will always disclose as such at the beginning of the post.

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