Do you love to travel? Do you want to travel more? Are you traveling with a chronic illness?
If you’re like me, traveling excites you! Who doesn’t want to jet-set around the world, eating their way through different foodie finds while exploring cultures, histories, and sceneries of new places?
But, sometimes traveling can be a challenge when we’re faced with health obstacles. I would know… I have Lupus. 😉
My health is my biggest focus when I travel and so, my trips heavily rely on advanced planning and careful execution. Unfortunately, this means that activities and foodie finds are not the only things I’m thinking about when traveling.
Sometimes, this means being a germaphobe, especially on flights since a large part of Lupus is dealing with a compromised immune system (and super germy planes).
I even have a sanitization kit (which I share later) to clean the plane and wear a mask throughout my flight. It must have looked really funny to the person next to me, pre-COVID-19 but, it’s always kept me healthy.
Other times, it means prepping weeks and weeks in advance to ensure I have every medical detail sorted in advance. If you have a chronic illness or are autoimmune like me, you already know what I mean. 😉
I don’t have to tell you the immense frustration and exhaustion that comes with countless doctor appointments, hospital visits, lab work, procedures, medication side effects on top of the already unpredictable symptoms, insurance hassles, and the guilt that comes from having to flake on someone.
But, just because we have to concern ourselves with these things, doesn’t mean we should only have to wonder what that fun getaway we’ve always dreamed about is like! We should be able to dream it AND do it!
Prior to COVID-19, I traveled 170+ days/yr. every year for the last several years. Since then, my travel dates have slowed down internationally, but are still very active domestically.
I’ve found that there is a way to keep my health in mind while enjoying myself on a new trip at the same time!
And so, my beautiful friends…
In this blog, I’m going to share:
- Travel tips & considerations that have helped me and I hope can help you too!
- My Lupus story which you might be able to relate to.
- Government resources so you can get the latest, up-to-date information when traveling domestically in the U.S. and overseas.
My sincerest wish is that you can take away at least 1 thing from my blog. That would be seriously amazing!
We have all been through obstacles with our health conditions. Let’s not allow that to stop us from living the life we want to live!
If you have a loved one with a chronic condition, share this blog with them!
[This post was originally posted May of 2021. Updated August of 2022]
As a Lupus Warrior… I Feel Your Pain
Most likely, if you’ve stumbled upon this blog, you or someone you know has Lupus or a similar chronic illness. If that’s the case, I’m so sorry. But, I can honestly say that I quite literally feel your pain.
I’ve been kicking Lupus’s butt since 2011. Every now and then, it tries to be the boss of me but what it doesn’t know, is that I’m outsmarting it a little more and more each day. I will raise hell before I ever let it win.
So, that’s my hidden superpower… I’m a Lupus warrior. How about you? 😉
Traveling with a Chronic Illness
Traveling is one of the most magical experiences you could ever have.
Sadly, for so many people with chronic illnesses, it’s just not possible, especially when the disease decides to rear its ugly head at unpredictable times and one is forced to cancel their trip last minute or sit out on activities that make the trip worthwhile.
I don’t know about you, but I know this feeling all too well. I could not possibly tell you the number of times I’ve had to either postpone or forgo travel plans altogether. Too many to count.
** Knock on wood ** … In recent years, my Lupus has been much more manageable. However, in my early 20s, it was a different story. I would frequently experience ugly Lupus flare-ups even while on trips. (i.e. my Salt Lake City trip <- read here)
Instead of being out there traveling and exploring, I was bedridden at home, hotel room, or in a hospital, suffering from a serious case of wanderlust and regretting having to cancel my plans all the while.
I’m sure many of you can relate. To put it simply, dealing with a chronic illness can be a literal pain!
No one should have to go through it. I often wish I could wave a magic wand to make all the ailments in the world go away but sadly, we don’t live in Fairyland and Unicorns don’t exist.
It’s important to remember that you are not your disease. You have interests, passions, dreams, goals… Don’t make your whole life about your health. That said…
A Body in Motion Stays in Motion
As my rheumatologist who diagnosed me at 17 would tell me in the beginning, “A body in motion stays in motion. A body in rest, stays in rest”.
Point blank… you gotta keep moving! Don’t stop living. Just find a way to work around your health condition. Even if you have to go at half the pace of a “normal/healthy” person or only have a few usable hours in your day vs. someone else’s 10 hours.
Do what you can without wearing yourself out. Take advantage of the days that you feel well. If you let yourself do nothing, your body will not want to move. Regardless of how crappy you feel, you must make an attempt to plan your life and fun things.
Life is Too Short, Do What Makes You Happy
I don’t know about you but, I’m not here to waste any time. My younger brother said something to me the other day and a lightbulb went off, “I’m not here for a long time. I’m here for a good time”.
So, I’ll ask you this… Are you the kind of person to give up on living your life just because you were diagnosed with a chronic illness?
That you’re here tells me… No freaking way!
I have a feeling that, like me, you want to travel the world and are not going to let your chronic illness stop you, which is amazing!
We want to enjoy life and that’s exactly what we’re going to do! Because what’s the point of working toward good health… taking the meds our doctors prescribe us, and staying alive if we’re not actually living??
We’re in this together!
So, how do we start traveling even with an ailment?
Only Focus On What’s in Your Control
It can be so tempting to be negative and think, “I can never travel” or, “I can’t do everything everyone else can on the trip”.
Instead, see what being positive does for you. Think, “I can travel, I just have to make slight modifications” or, “I can’t do that, but I can do the other thing instead”.
Instead of focusing on what’s out of our control (having a chronic condition), maybe we can focus on what’s within our control (the way we deal with the condition) and what we can do about it.
For example, what can I do about my Lupus? Well, try as I may, what I can’t do is get rid of it. However, I’ve come a long way since my diagnosis 10+ years ago and have learned what works for me while traveling with Lupus.
What I can do, however, is talk about the health problems I’ve faced the Real Girl Review way and put it all out there, the good, the bad, and the ugly… in the form of this blog so that it can help people like yourself who could benefit from the info.
Now, I share my backstory so you can relate to me a bit better. Remember, even before I traveled 170 days+/yr., I was just like you, struggling with health issues. Anything is possible.
My Lupus Story (the mini version)
Like many, I was undiagnosed, misdiagnosed, ignored by many in the medical field, or written off as a moody teenager.
PMS, dramatic teenager, boyfriend issues, parent problems… these were all things I was told were the real problem by “professionals” when the test results did not align with my medical conditions being presented.
Specifically by medical professions in the emergency room, specialist offices, and (probably most offensively) our family doctor who erred on the side of caution that any teenager clearly only had “emotional issues” going on and not truly physical.
Something had to give.
My Lupus story is a little crazy.
I was sitting in art class when out of the blue, someone threw a paper airplane across the room with a pencil attached to it. Guess where it landed? Miraculously (or unmiraculously), straight into my right eye. I was 16.
Now, you would probably think that that was the worst of it. No… That was only the beginning.
How I Was Diagnosed With Lupus
Fast forward to the eye doctor appointment. The specialist who I was supposed to see was in surgery so he referred me to his associate who, after examining my eye decided that what the focus of my visit should be was not my corneal abrasion but rather… another illness. She suspected Lupus.
Just what that illness was had yet to be determined, but was completely foreign to me. So, she wrote me a script for some lab work and I was on my way.
I can still vividly recall leaving the doctor’s office and laughing with my dad at the time. We both agreed, “Clearly, she doesn’t know what I’m seeing her for”.
I just happened to get lucky with the kid who threw the pencil in my eye. That little incident that led to the doctor’s visit changed my life. It’s one of the best things that’s ever happened to me.
A few weeks later, I was diagnosed and being treated for Lupus (SLE).
Getting Used to My Diagnosis
It felt weird being 17 and thinking, “I have a disease.” I had a lot of growing up to do. I would be a young person in an old person’s body. But, it would all be okay. I was going to stay positive.
Originally, when I got the test results back, I cried. Not because I was sad but because I was relieved… relieved to finally have an answer after years of pain and discomfort. I was homeschooled at the time.
Honestly, it really sucked having to miss out on so many activities. My Lupus was still newly diagnosed and I had no way of knowing to what extent it would affect my body and what I should do to help my symptoms. After all, medication only quiets the symptoms, it doesn’t deplete them.
I needed to find a way to live life without letting my disease become me. It was a huge challenge every single day. But, my optimism and desire to live life to the fullest is what got me through.
Fast Forward 10+ Years Later
I’m still learning how best to deal with my Lupus. It’s been an ongoing journey but an incredible one to say the least.
For me, it’s been all about finding the right lifestyle and health regimen while not being too stringent. I lead a normal life most of the time.
Every now and then my body acts up and does things that I’m not completely familiar with and so often I ask myself, “Is this my Lupus talking or, am I just wearing my body out?” And then, I’ll take some rest for myself.
Or, my body will feel like it’s been on too many medications, and then, I’ll call my doctor to start getting off of things or getting on things. I’ve increased and decreased dosages hopped on and off my medications more times than I can count.
For me, it’s about finding the right balance between Western medicine (doctors and treatment plans) with a bit of my own holistic healing which mostly comes from me being happy and doing things I love while eating a well-balanced diet (not denying myself of desserts of course).
So, now you know my story! The question now is…
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Is it Possible to Travel with a Chronic Illness?
What happens when we find ourselves with a chronic illness that prevents us from doing the things we love like traveling? Should we stay on the couch bingeing on ice cream and Netflix while living vicariously through our favorite travel shows?
No way! It doesn’t have to be that way. Don’t think you have to miss out on traveling just because you have a chronic illness.
I didn’t always travel 170 days+/yr. I had a lot of health hurdles to push through. Since being diagnosed with Lupus, I have learned a lot about the disease and what I can do to manage the symptoms while still seizing the day!
I’ve developed a healthy lifestyle that works for me whether I’m at home or thousands of miles away. I strongly believe that there is an optimal way to travel while having fun and staying on top of our health.
Everyone’s body is different though. Only you know what you’re going through. It’s all about learning what works and what doesn’t work for your body.
It’s amazing what a few slight modifications can do for us. It’s as simple as alternating between periods of activity and rest (which I’ll get into more detail about later) or carrying a parasol in your bag. I also have a few other tricks up my sleeve I’ll share in this blog. Read on. 😉
20 Travel Tips for People with Chronic Illnesses
Some tips may work for you and others not so much. Pick and choose what you like and make it a part of your travel lifestyle and daily regimen!
With that said, I genuinely hope that my blog helps you in your own chronic illness journey so you can go out, live your life, and show that sucker who’s boss… YOU!
If anyone knows how hard it is to pass up fun plans because your body isn’t cooperating with you, it’s me. But, we’re in this together now! Let’s get right into it.
*** Before we dive in …
I don’t pretend to be a doctor nor am I offering medical advice. I REPEAT, this should not take the place of a doctor’s visit or seeking medical attention. My tips are just something that you can take into account in addition to your health regimen.***
As I’m not a medical professional, it’s imperative that you don’t just follow the tips I will share with you without consulting with your doctor before deciding to travel.
Tip #1: Scout out local hospitals
You never want to be in a foreign country or even another state without knowing where to go in the event of a medical emergency, especially if you have a health condition.
I’ve had my share of health scares with Lupus while traveling both internationally and domestically. Flare-ups happen. Be prepared.
Tip #2: See if the country you’re traveling to allows your medication
Whether the medication is prescribed by a doctor or purchased over the counter, it’s always a good idea to make sure you’re traveling with medication legally. Even if you think the medication is benign, double-check with the country before traveling. You can also check with your pharmacist or doctor. They may not already know but have the resources to check for you.
For example, in Japan, there are strict regulations on common over-the-counter products we use in the US like Benadryl, Tylenol PM, or Vicks.
Not paying attention to medication restrictions can lead to serious consequences like travel delays, confiscation, penalties, jail time, and even death. Know before you go.
Literally.. look up the US Department of State.
3 weeks before the COVID-19 lockdown went into place in 2020, I was scheduled to travel to Japan. With some research, I learned that their prescription requirements are very strict… (as is Germany which I travel to often).
Tip # 3: See if you can take vaccines needed
Consult with your medical professional about possible interactions before taking any vaccines or medication for a given country. For example, I can’t take quinine with my Plaquenil.
Tip # 4: Bring your health documentation with you
- printed copies of your insurance card(s) & ID (I’ve been asked for these items by airlines, overseas doctors, etc.)
- doctor’s letter listing your condition(s), the medications they prescribed to you, and the reason(s) they were prescribed to you.
List the ingredients in the medication(s) you’re taking as well, not just the name of the medication as it is the ingredients that would be banned, not necessarily the brand name.
Tip # 5: See if you need prior authorization for your medication or medical device
Well in advance of your trip (4-6 weeks recommended), check with the country you’re going to before bringing your medication or medical devices. You may need to submit your medical documentation to government officials before arriving. Give yourself enough time to get prior authorization if needed.
US Department of State lists different embassies and their info so you can contact them.
Tip # 6: Carry your prescription medication properly when traveling
U.S. Customs & Border Protection (CBP) states that prescription medications should be in their original containers with the doctor’s prescription printed on the container.
Tip # 7: Print an emergency contact list
In the event that you lose your phone, list your doctors and loved ones the old-fashioned way (i.e. on a piece of paper) so you can contact them in the event of an emergency.
Tip # 8: Take enough medication on your trip
Get more medication than the number of days you’ll be traveling in the event of a flight delay, trip extension, etc. However, U.S. Customs and Border Protection does not recommend traveling with more than a 90 day supply.
Tip # 9: Have medical insurance that covers you when you travel
You never know when a medical emergency will arise when you’re traveling with a chronic illness. See if your insurance plan covers you overseas.
If you don’t have international health coverage, check out the insurance providers the U.S. Department of State lists on their website. You can compare the insurance plans with sites like Square Mouth, Nerd Wallet, or Insure My Trip
Tip # 10: Take advantage of your good days
By making the most of the days you feel good and having rest days in between, you won’t be pushing yourself to do more than you are physically able to do.
You’ll also have more energy for the things you really want to do!
This brings me to my next tip…
Tip # 11: Quality vs. Quantity
If you only have enough energy for 1 or 2 activities that day, make it count. Don’t waste your energy on things that don’t matter to you. Communicate with the people you’re traveling with and if need be, encourage them to go on the next activity without you. That way you get to rest for the next activity you want to do and you’re not holding anyone back.
Tip # 12: Communicate your condition with people in your group
Lupus, like so many chronic illnesses, is invisible. Hence the nickname, “Invisible Illness”.
It’s not like we wear a cast or are in a wheelchair. Our physical symptoms are not obvious. So, we can’t expect everyone to read our bodies for how we feel.
Make the people you’re traveling with aware of your condition and don’t be afraid to ask for help. They can’t understand you if they don’t know what you’re going through.
Tip # 13: Have a code word
An easy way to bail out of something last minute when you’re not feeling well, without feeling guilty or obligated is to have a code word with your loved ones. No discussion needed, just a code word.
I’ve done this in the past and it’s been very helpful. I’ll just say, “I’m feeling Lupy” (haha.. get it, Lupus) and they get it.
Plan where else you can go while they continue on (i.e. hotel, café, etc.)
Tip # 14: Make frequent rest stops during the day
Plan your activities so that you have some rest in between whether that’s at a restaurant or under a cool, shady tree.
Tip # 15: Be prepared for UV light
Are you sensitive to the sun like me? Due to my Lupus having negative interactions with UV rays, I have to be “sun-aware” and “sun-safe” at all times when traveling. That means I can’t be exposed to sunlight for more than a set amount at a time. I’ll usually bring a foldable hat or parasol/umbrella in my purse in case I end up in a sunny place.
How can I still enjoy activities while being sun protected?
A few simple ways…
- I’ll do an outdoor activity with a mix of sunlight and shade. (i.e. park with trees & benches or a beach with umbrellas)
- Bring a small, compact umbrella in my purse
On Amazon, Leagera has some great ones that have a built-in flashlight handle!
- UV hats
I like the compact ones that fold up easily in my purse.
- Wear UV Sunglasses
I like sports sunglasses for outdoor activities. You can either go with a higher-end brand like Oakley or a cheaper pair will also do the trick just fine. Make sure it’s UV400 or higher. Find out if your sunglasses are really protecting your eyes here.
Tip # 16: Bring a snack and water bottle with you
Tip # 17: Bring a pill chart with you
Just in case you have brain fog and forget to take your meds, you get stuck somewhere and can’t go back to the hotel to take your meds, or, were in a rush to leave that morning, bring a pill chart in your purse.
Tip #18: Wear the right socks!
I have poor circulation in my feet. On days when I’m sitting a lot… especially on long flights, I like wearing compression socks! I also wear AA battery heated socks because my feet get super cold! My friend recommended these to me and I’ve been hooked ever since.
Check with your doctor before wearing either of these.
Speaking of flights…
Tip #19: When achy, a heating pad may help
I’m not offering medical advice on this, but, whenever I’m sore and achy, I use a heating pad (back, shoulders, neck, legs, etc.) and it really helps me. You can even find XXXL King size heating pads on Amazon that’ll cover most of your body! Use it when you get back to your hotel after a long day of sightseeing.
Tip #20: Bring a sanitizing kit with you
Long before COVID-19, I was concerned for my health when traveling and in contact with other people.
For immune-compromised folks like myself, traveling can be very dangerous, especially when taking public transportation (i.e. germy planes, Ubers, subways, trains, etc.) and staying at hotels.
I never travel without my sanitizing kit. It’s not premade, it’s just things I’ve put filled the bag up with. People used to look at me on the plane every time I’d take out my little zipped-up bag. My sanitization process is very thorough whether on a flight or in a hotel room.
What’s in my sanitizing kit?
- disposable gloves (1 for ea. flight)
- individual sanitizing wipes
- mini hand sanitizer
- MyAir mask w/ filter
- Sanitization (hand sanitizer, masks, gloves, wipes, etc.)
- Sun Safe (cover ups, hats, skin guards, sunglasses)
- Fibromyalgia (compression socks, heating pad, heating socks)
My sanitization process on flights:
Once you’re done wiping down the tray table, seat handles, TV screen, call button, window, seat belt, etc. take the wipe and take off your glove. As you turn it inside-out, the glove will hold the dirty wipes. Which you can now throw away! Then, use hand sanitizer.
My sanitization process at hotels:
I also carry a can of Lysol aerosol spray and use Clorox disinfectant wipes on everything from surfaces, door handles, phone, remote control, etc… As soon as I enter the hotel room, I wipe down as soon as I walk in the door. I also bring a pump bottle of Dial antibacterial soap.
Since doing this, I’ve been sick significantly less. It’s a great thing to do if you’re autoimmune and on a trip.
What else should you add to your packing list?
Check out: The Ultimate Packing List for Every Type of Traveler
I hope you found these travel tips for traveling with a chronic illness helpful and inspiring. When you start planning your travel adventures, please keep this blog post in mind for your own trip!
What do you struggle with the most when traveling with a chronic illness? Do you have any tips to share?
Would you like more of this type of content? Or maybe there’s something else you want me to write about?
Let me know in the comments below!
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