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  • Writer's pictureAmy Leggett

10 Tips for Traveling with Lupus (or Other Autoimmune Diseases)

Sant Andrea Cathedral Amalfi
Taking a break to take in the scenery in Amalfi

Let's face it, as much fun as it is to travel, it can be a lot for anyone. Flight delays or cancellations, weather struggles, hauling luggage from place to place, cranky travel partners...just being out of your normal environment, all of these things can exhaust you and interfere with your vacation enjoyment. Add to all of that a physical or health limitation and it makes things even more difficult. However, if you love to travel like I do, you don't want to miss out on seeing the world. The good news is you don't have to if you plan your trips taking into consideration your limitations and figuring out ways to work around the obstacles. This information is also valuable if you travel with someone with Lupus or some other health condition that may impact your plans.

My Lupus Story

San Luis Obispo California

I was diagnosed with Lupus in 2015. Lupus is a systematic autoimmune disease in which the body's defense system mistakenly attacks healthy organs and tissue in the body. It affects joints, skin, kidneys, blood cells, lungs and sometimes even the heart and brain. I am fortunate that my Lupus has not been particularly aggressive, but I still struggle from time to time with flares of the disease. My flares are generally mild and include symptoms such as fatigue, muscle weakness, and joint pain. While sometimes flares just happen without any warning, there are certain things that will definitely trigger a flare. I have had flares on vacation and it is a huge bummer! I have learned through trial and error what things to avoid or watch out for. However, sometimes I like to forget I have to deal with limitations of Lupus and am not as careful. I always pay the price.

Unfortunately, some of the things that can cause me to have a Lupus flare are things that are common with travel (stress, intense sun, lots of walking/activity). As eliminating travel from my life is not something I want to do, I have learned (and am still learning) what I need to do when I travel so that I don't ruin my trip or have a long recovery when I get home (as I just experienced upon returning from my most recent trip to Italy). These tips and recommendations would also be helpful to anyone dealing with any other type of autoimmune disease that involves flares of fatigue, muscle weakness and joint pain (which is most of them!).

Lupus Travel Tips

  • Make sure your travel companions understand your disease and your limitations. Let your travel companions know ahead of time about how you need to take care of yourself and what could happen if you don't. Also, let them know if you feel you are pushing your limits. This communication will make them more understanding when you need to take a break, need to bow out of an activity or start to not feel well. When I did the AMA Waterways Riverboat Cruise with my friends, I had to skip an excursion and went to bed early a few nights. They understood and were supportive because they wanted to me to feel good going forward!

Friends checking out castle ruins in Heidelberg
  • Don't push yourself too hard and do take frequent breaks. This ties into the first tip and is one that I have a hard time with. I am so excited to explore when I get to a new place that I like to go, go, go so I can fit everything in. Even though my girls were constantly checking in on me on our last trip to the Amalfi Coast, I kept saying I was fine and continued on full steam ahead. To be honest, I was hanging in there and doing ok, but I should know better and know that if I push myself too hard it is going to catch up with me. I did have a flare towards the end of the trip and also caught a virus on the way home that really got a hold of me because I had let my body get so run down. My immune system was shot and the virus wreaked havoc on me for a full month after I got back! Lesson learned (I hope), but it is easy to forget when you are excited to be traveling and exploring the world. It is important to pace yourself throughout the day and take frequent breaks to rest and hydrate.

Path of the Gods Positano Amalfi Coast
  • Schedule rest days in your itinerary. When planning your vacation itinerary, be sure to schedule rest days or relaxing activities after days that require more exertion or lots of time in the sun. I didn't do a great job at this on our last trip to Italy. It was a little more difficult as we were moving from spot to spot and so we tried to see and do as much as we could in each area. Looking back, there were a couple of very strenuous days in a row that required significant time in the intense sun. It was shortly after that I started feeling the beginning of a flare. If I had to do it over, I would have split those days up and scheduled something low key in between.

Lemoncello Spritz in Ravello
  • Don't be afraid to sit out certain events. This one is hard, but sometimes necessary. If you aren't feeling great or if you have had a lot of sun exposure or exertion already, it is a good idea to stay back and take care of yourself. I am getting better at this and will definitely stay back at the hotel to take a nap or do something low key. I may have occasional bouts of FOMO, but it's better to choose when I want to miss out rather than being forced to miss much more if a major flare up happens because I didn't properly rest.

Villa Rufolo Ravello
  • Limit sun exposure and ALWAYS use sunscreen. Sun exposure can trigger Lupus flares. I have personally experienced many flares after too much sun. I used to love beach vacations, but those are a thing of the past for me. Multiple days with hours on the beach spell disaster for me and for most people with Lupus. However, even when you take different types of vacations exploring different parts of the world, it is easy to get caught out in the sun for extended periods. That is why it is important to always apply sunscreen and wear protective clothing regardless of your plans so you are always protected from intense UV rays. Again, this is a lesson I continue to learn. I often forget the sunscreen and don't properly anticipate the amount of sun exposure I will get when planning certain activities. It happened in Italy and I paid the price with a flare (which is why I skipped the beach day even though I had planned to sit under an umbrella). Learn from my mistakes and ALWAYS apply sunscreen in the morning before you head out and bring a wide-brimmed hat to protect your face from excessive sun. But limiting sun exposure shouldn't stop you from doing fun things. You just need to adjust expectations and think of creative solutions. We really wanted to do a boat tour around Capri, so I just made sure to stay under the shade canopy on the boat most of the time and we had a blast!

Private boat ride around Capri
  • Rest a few days before your trip to conserve energy and go into vacation feeling rested. Often we are so busy and stressed trying to get ready to go on vacation, that we start out already in a deficit. If we are traveling to a different time zone, we may also be dealing with jet lag. Taking steps to conserve energy before you leave and having a plan to deal with anticipated jet lag will help you start out feeling energized rather than already fatigued before you even get started!

  • Try to eat healthy, anti-inflammatory foods when you can to keep inflammation down (of course make sure to also enjoy ALL the local foods you want to are on vacation after all!). Disclaimer: The food below is not necessarily anti-inflammatory, but it was certainly delicious! Bolognese from Chez Black in Positano and it was the best bolognese I've ever had!

Bolognese at Chez Black in Positano
  • Pack all your medications for managing flares in your carry-on bag and bring extra in case of delays getting home. I have a once a week injection that needs to be refrigerated and would have to be cleared to travel with, so I generally don't take this with me. So far it hasn't caused me too much trouble skipping a dose while I am away. However, you should always talk with your doctor before deciding whether or not to skip medication when you are away. I have several other oral medications that I bring to ward off any joint pain or other frustrating symptoms. I always make sure to bring enough for the days I plan to be away plus extra in case I run into travel difficulties on my way home. Also, I ALWAYS put my medication in my carry-on bag so there are no problems if me and my checked luggage take different routes to our destination.

  • Try to travel during off-peak times to reduce exposure to crowds and reduce time standing around to get into popular tourist sites. My favorite times to travel are the "shoulder" seasons...that travel period between peak and off-peak seasons. Generally this is in Spring and Fall which is why I mostly plan my big trips in May or September. Not only do I usually get lower rates but I still get the nice weather. And, most importantly (especially for this blog), the crowds are significantly reduced. As a person with a compromised immune system I try to avoid large crowds as much as possible (although it is not possible to avoid them all time) and reduce the extended waiting periods standing in the hot sun surrounded by hundreds of people. Aside from health benefits it also makes my trip much more enjoyable!

  • Plan a day or two of complete rest once you get home. Unfortunately, my one or two days turned into a month after my last trip since I got so run down and got sick. Under normal conditions, I always plan to take a day or two to chill out when I get home so I can regroup and rest up before reentry into real life.

Lupus (and other autoimmune conditions) can certainly impact how and where you travel, but a little planning and awareness of how you (or your travel companion) are feeling while you are on vacation can go a long way to preventing a flare! Hopefully these tips can help you stay energized and healthy as you explore the world. Maybe someday we will cross paths on our adventures! Cheers!

AMA Waterways Chef Dinner Amsterdam


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