How to Travel with a Chronic Condition

I’ve been pretty open on my blog about being a two-time childhood cancer survivor. It’s such a huge part of my personal identity and a source of pride for me. But what I haven’t really talked about are the side effects that come along with being a cancer survivor. I’m really lucky in the fact that most of the side effects doctors told my parents could occur, didn’t occur (mental and physical disabilities as well as not going through puberty). However, I do suffer from lymphedema in my right leg which causes it to swell under certain circumstances. Lymphedema is when the lymph system (usually of a limb) stops working properly. In my case, all the lymph fluid goes to my right foot/leg but due to a malfunctioning lymph system in my right leg, it is unable to get back up. This causes my right foot/leg to swell due to the pooling of fluid.

Throughout my adventures around Europe, I’ve learned how to travel with a chronic condition. Hopefully if you have a chronic condition and are unsure about traveling, this post can alleviate your fears and help you plan your dream vacation!

When traveling with a chronic condition, these are some of the most important tips and pieces of advice that I’ve picked up along the way. If you have a chronic condition, please let me know if you’d add anything else to this list!

1 | Receive a Correct Diagnosis

I know that this seems totally intuitive but you’d be surprised by how many people are misdiagnosed or not properly diagnosed – including myself! While I’ve been diagnosed with lymphedema since I was 16 years old, I never got a full, complete diagnosis until I was 24 years old. When I was initially diagnosed, it was due to my overly-persistent and stubborn parents! My leg started swelling around puberty and none of my doctors could figure out why. Well, my Dad did a quick Google search and immediately diagnosed me with lymphedema. We were shocked that all my doctors (including multiple specialists) missed this diagnosis given my medical history and lymphedema being a common side effect of cancer survivors.

When I was 24 years old, I had additional testing done because I felt like the swelling had gotten a bit worse. While my doctors confirmed my lymphedema diagnosis, they were quite stumped because I had additional symptoms that didn’t align to lymphedema (specifically, when swollen, my leg feels hot and my foot also turns a deep red/purple). Turns out that I had a condition totally unrelated to my cancer treatment! A valve in one of my deep veins doesn’t properly close all the way so blood leaks out and pools to my foot. Thankfully the treatment for both of these conditions is almost completely the same.

A correct diagnosis can alleviate a lot of headache in terms of inaccurate treatments and potentially damaging treatments. If something feels off, seek an additional opinion! I am lucky to have parents that are huge advocates for my health and seek multiple opinions.

2 | Outline All Your Medical Supplies

There are three levels of treatment for me and I always evaluate before my trip which one(s) I need to bring with me.

  1. A prescription compression stocking (much more intense than the over-the-counter stocking) is used for day-to-day walking. Before I travel, I always double check that my stocking hasn’t lost its “compression.” It is also essential that I wear this on flights. I’m much more prone to getting blood clots than the average person
  2. For a flair-up, I can wrap my leg in ace bandages using a certain technique and different size bandages. I usually don’t take these on a trip that’s less than 2 weeks because I rarely experience these flair-ups anymore and they take up so much luggage room. As I mention below, if the travel conditions could make me more prone to a flair-up, I’ll bring them.
  3. A compression machine is only used in extreme cases. This machine is quite bulky and heavy so I never travel with this. It comes with a huge leg stocking and when turned on, kind of feels like a blood pressure machine (here’s a picture of the entire contraption. I should note that my machine is much larger than this!). I probably only use this machine a few times a year so it only travels with me when moving!

If your condition requires medication, always make sure that you have enough medicine plus an additional week’s supply. This is for potential emergency situations that could arise including cancelled flights, natural disasters, hospitalization, etc. This goes without saying but NEVER pack your medicine in your checked luggage. I’d also recommend keeping any medicine in the original containers for flying. That way, airport security and passport control can see that it is a valid prescription for you. Make sure to check all your supplies and medication at least a week before your travels to make sure you have enough time to get refills, prescription overrides (which can be a complete headache and vary depending on insurance company), and new supplies. Lastly, find out the local name of your medication in the foreign country in case you need it in an emergency!

3 | Double Check Paperwork and Transportation

Because I travel with medical supplies, I always call the airline ahead of time to check their policy. Every airline, even the budget airlines, allow medical allowances if you have medical supplies. I’d say the best airline so far to deal with me was Virgin Atlantic. I called ahead of time and they gave me an additional carry-on allowance of 20 pounds for my machine. Plus, they had me do early boarding so I could find a spot to store my machine! EasyJet required a doctor’s note to prove that I needed the medical device. This actually isn’t uncommon and I now keep a doctor’s note as a PDF in my emails confirming my diagnosis.

Before flying for the first time with my machine, I had to make sure that it was even allowed to fly due to its battery. I’d always recommend calling the airline about any medical condition! Also, if you have something that is heat/cold sensitive (potentially needing to chill medication, syringes, etc), make sure to talk to the airline more than 48 hours in advance about special accommodations. Lastly, double check that the medicine you’re bringing is allowed in the foreign country (and through airport security…airport security varies around the world)! Some countries don’t allow certain medications. I always say – when in doubt, call the airline! Every airline I’ve ever used has been very helpful and considerate. Obviously, the rules are much more flexible when taking a boat, train, or car. However, it is still always a good idea to call ahead of time.

Besides a doctor’s note, always carry an extra copy of your prescription, diagnosis, etc. in case you’re asked by passport control or have a flair-up and need to see a doctor/be hospitalized. You can never be over-prepared! I always keep physical copies of all this information as well as PDFs of these documents as an email. If possible, it is also a good idea to get these documents (or at least a statement explaining your chronic condition) translated into the local language of where you’re traveling.

4 | Select a Destination that Aligns with your Condition

For me, my lymphedema is exacerbated by walking and temperature – especially hot weather!!! Therefore, I’m never going to book a trip to Australia in the middle of their summer. This chronic condition works great for me because I hate hot weather anyways ;) I also always wear my compression stocking under a pair of jeans if I know I’m going to do a lot of walking. The best part of a compression stocking is that no one notices that I’m wearing one. I do get a bit self-concious of my swollen leg so I tend to try to hide it in photos (see above photo as an example).

If you have dietary restrictions, allergies, etc., make sure to always get this properly translated into the local language and avoid food cultures that could agitate, provoke, or expose you to potentially harmful scenarios.

5 | Choose Proper Clothing and Activities

As much as I love sandals, you won’t find me wearing them a lot because they are horrible for my feet and can cause my lymphedema to flair-up. I’ll be honest, I’m most stubborn in this category because I’m a 26-year-old woman who still wants to look stylish! If my parents could choose, I’d be in bulky sneakers for all my travels because they provide good, sturdy support (probably doesn’t help I have a completely flat foot. Zero arch). Instead, we’ve compromised at Sperry’s. I have 4 pairs with me in Germany and wear them all the time. They’re comfy, stylish, and provide me with the support I need! Make sure that you wear clothing that complements your chronic condition.

Additionally, I realize that there are activities off-limits for me. Last month, I went snowboarding in the Alps for a week. As much as I wanted to ski with my boyfriend and his family, I knew that skiing shoes were probably one of the worst clothing items for me! The tightness of the ski shoe would have definitely exacerbated my lymphedema. I remember I went ice skating about 5 years ago and when I took the skate off, my entire right foot was in severe pain and totally black and blue. Yes, it sucks that I can’t partake in these activities but I know that in the long-term, my foot and leg will be thanking me for this. Know your limits and stand firm with them!

6 | Travel with Supportive Individuals

Half the battle of traveling with a chronic condition is having people travel with you that understand your condition. Before going to business school with my sister last year, most of my travel was solo travel. My sister, and now my boyfriend, were/are 100% understanding and supportive of me traveling with a chronic condition. Yes, there are times that I have to sit down for a few minutes and prop my leg up because it has started swelling like crazy. I was/am always worried about holding people back because I might need to stop more frequently or might not be able to do something. Traveling with supportive individuals makes me feel more confident traveling and reduces my anxiety.

I’ve also found that it is great to educate your fellow travelers on your chronic condition. I now find my boyfriend asking me after a long day of traveling whether my leg is swollen and if I need to wear my stocking! He got particularly concerned that snowboarding would agitate my leg ;) Surprise discovery, it didn’t (the cold weather probably really helped)! These small reminders or questions make me feel like other people care about my chronic condition and overall well-being.

7 | Buy Travel Insurance

I’m probably the worst traveler ever but I’ve never bought travel insurance for any of my trips. I’ve also never been in a scenario where travel insurance made sense – especially because my chronic condition would never force me to cancel a trip. However, if your chronic condition could easily go from good to bad, or you have the potential of flair-ups, buy travel insurance in advanced to cover your butt!

Want to travel but have a chronic condition? Totally doable! Here are some hints and tips for traveling around the world with a chronic condition!
 Anything that you would add to this list? Traveling with a chronic condition definitely requires a bit of patience and planning, but it is totally doable and your condition shouldn’t stop you from seeing the world!

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  • Thank you for speaking so honestly about your condition. This is so incredibly important and helpful. A lot of people with chronic conditions assume they can’t travel because of the logistic challenges involved, but your experience shows that while difficult, it can totally be done!

  • Thank you for sharing about this! I really knew nothing about lymphedema before you talked to me about it. I’m glad you have learned how to travel and enjoy your life regardless and know how to best take care of yourself while doing so. It definitely helps to have people around who know about it!

  • Jordan, I thoroughly enjoyed reading your blog about traveling with a chronic condition, read every word. I had no idea you went through all these extra procedures and cautionary measures to travel around the world as you have done. It makes me realize even more what an amazing young woman you are. I admire and love you so much. I’m hoping some day we will get to meet Peter.

    Don and I each have a number of chronic health conditions and take a lot of prescriptions and supplements for them. While we know it’s best to take medications in the original containers, because it takes up so much precious space, we have found that it has been acceptable (even in foreign travel) to take an exact list of the medications, dosages, etc. along with a letter from our doctors stating and listing that he has prescribed them. We also now use CPAP machines which require distilled water, so that’s an added complication; therefor at our ages (77 and 80) we will probably not do any more foreign travel…although I would love to go to Cuba and it’s only 90 miles from Key West!! :)

  • I found your post really interesting! I tend to have some issues with my left leg due to a congenital birth defect I was born with. For whatever reason it’s always comforting to me to know that I’m not alone with some of my issues. Thanks for sharing!

  • This is wonderful information – travel is still possible when you have limitations. My family finds destinations and accommodations that fit with my dad being in a wheelchair. Thank you for sharing this!

  • my first thought on reading this is: how amazing that you persevere and still find a way to travel and do the things you want! second, although it’s very different, a lot of your tips are applicable for traveling with food allergies. some places I would looooove to visit, but I’d have to bring all my food with me. and my snacks and meds always take up so much luggage space, I can never travel as light as I like. but, like you, I find a way to make it work :)

  • Thank you for this post! I have chronic asthma, anxiety, and IBS so I totally can relate! I agree with all the above suggestions and have used almost each one (except the travel insurance).

  • You’re such an inspiration, Jordan! I’m lucky to be pretty healthy, but my sister, is also a childhood cancer survivor and is missing her kidney and has some long term repercussions we have to consider when traveling together. You gave some great advise and hopefully you inspire others to travel too!

  • Jan now has a glucose monitor that attaches directly to his arm, so he has a doctor’s note in German and English explaining that he is diabetic and it’s a necessary medical device. He also has a “Diabetikerausweis”. So far nobody has ever asked to see either document – he just says “I’m a diabetic”, explains the thing on his arm, shows them his supplies. and they wave him through. He still always takes them though because you never know when somebody will want to see a doctor’s note! I have joked that if he ever did want to smuggle anything he would have to put it inside an insulin pen and nobody would even ask ;-)

  • I love this post! I don’t necessarily have a chronic condition, but I do have persistent pain in my right foot after 2 surgeries. #6 is the main one for me…I know exactly what you mean about the anxiety. It was really hard for me at first to just be open with people and tell them when I needed to sit down. I would always try to continue on, because I didn’t want to hold anyone back or seem high maintenance. I think I’ve gotten better now, but a reminder is always nice. :) Thanks so much for sharing!

  • Hi, Jordan, you are an inspiration just because you are you, does that make sense? You have an uplifting spirit and a positive outlook on life that shines through in your blog. I was originally attracted to your Scotland travels since it is the home of my ancestry (Mom was born in Edinburgh). I happened to mention some time ago in an email that I loved your shots of Arthur’s Seat, I had been there also in Sept 2015 the same week experiencing a gifted day of blue, sunny skies about 60+ degrees (all day, a miracle). I mentioned that I had been the following March 2016 and was looking forward to my next trip. Here was the caveat, I was diagnosed with an aggressive, rare type of cancer August 2016 (surgery, high dose chemo combo, radiation). First CT scan March 1, 2017 (NED), so now that I am on the other side of this cancer, I am not waiting for my next scan to start living my life again. Trip planning for several weeks in Scotland has begun, side affects or not. Your blog has inspired me to just do it. I am sorry you had to experience the challenge of cancer at such a young age but maybe that experience contributed in your wonderful, positive spirit which is helping so many cope. Best wishes for long, wonderful, healthy life, JOrdan and thank you.

  • Jordan,
    My sweet, sweet child. I never thought that when you were born that 26 years later you would be living in Germany and writing a post about your struggles. As your dad, I have tears streaming down my face. You are so open and I know there are others that will be inspired by your journey. You have always addressed every struggle with determination and strength. I am blessed… Love ya, Dad

  • Kudos to never letting anything go against doing what you want to do, and for being very flexible in adapting. I hate hot weather too, and I live in a tropical country where our seasons are hot and hotter. I hope there’s a coping mechanism for that lol