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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, including traveling with a chronic condition. 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!
Table of Contents
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.
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.
- 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
- 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.
- 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!
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.
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.
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!
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.
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!