Let’s face it: travel is already stressful enough (but fun!), especially going to a destination you’ve never visited. Traveling i lupus gives it a whole new element of uncertainty and anxiety.
But just because you have a chronic illness, doesn’t mean you have to stay homebound. Traveling with lupus is absolutely possible, and I’m living proof of that. And I have wonderful memories to show for it.
It just means you have to take extra precautions and manage your health so that you can feel good and do everything you can and want to do during your trip.
Here are some things to consider when traveling with lupus:
Traveling with Lupus: Before the trip
Assess your health levels and plan your destination around that.
Observe your symptoms on a day-to-day basis. Do you get easily fatigued? Joint pain? Swelling? Take those into consideration. Only you and your doctor know your limits and what you can or can’t handle. There’s a reason I have never gone backpacking or on a mission trip: I don’t have the physical stamina to do either, and I can get a flare under those conditions.
Every lupus patient is different. Some may only be able to handle road trips, while others are able to fly. My mom, older sister, and I all have lupus. My mom can easily go to the Philippines and has multiple times within the past few years. I have been able to go to the Philippines in 2014, which was the first time coming back since I was a baby. My sister, on the other hand, cannot go back to visit because her lupus affects her lungs, and Manila has terrible pollution. Her lupus is also worse than mine and our mom’s. She is able to still fly to places like Hawaii, LA, Houston, etc.
Refill your medication.
If you take away only one piece of advice from this post, please let it be this. If you feel like you are running low on your medication, do not hesitate to call your pharmacy to refill them. If you run out of refills, contact your doctor so that they can request your pharmacy to refill them. Traveling is definitely not the time to run out of your meds. You need enough medication to cover your trip and more.
Pack all of your meds in your carryon.
Chances are, you have a pill tray where you store your meds for the week. But you’d be surprised that there are a lot of people with lupus who don’t, or don’t take their medication consistently. I know: I was one of them, and I paid a lot for it in flares and hospitalizations. Please learn from me. I also had an incident in 2012 when I was in the airport restroom about to depart to go to Vancouver, and instead of packing my meds in a pill case, I had them in a ZIPLOCK BAG in my purse! And my purse was open, so when I dropped my purse in the bathroom stall, guess what also fell? My flimsy ass Ziplock bag opened and all my meds fell on the floor. No wonder I was feeling like I came down with a flare during my trip there.
You want a pill tray that’s secure and has a strong push button, like the one I have right here. If you have to take your medications more than twice a day, you can get pill trays that have 4x/day slots like this one.
And do not forget to bring your prescription bottles. Amazon sells a lot of medicine bags that secures your bottles, but I pack them in my makeup bag since it’s big enough.
Research your destination and pack for the season.
Heading to tropical Hawaii? Do not forget to bring a hat and sunscreen. Your rheumatologist will remind you, too. Trust me. People with lupus are often sensitive to the sun, and sometimes it comes from the medications you take. It’s a bummer because I love the beach, and I love to swim. And I’m lucky and thankful that I am not as sensitive to the sun as other people with lupus, but I still take extra precaution by wearing sunscreen (at least SPF 30). During our honeymoon in Mexico, Cecilio bought me a wide brim hat at one of the local stores, and while it was annoying to wear sometimes, it offered me protection and I would’ve felt worse without it.
Jet-setting during the colder months? If you have Raynaud’s, definitely bring a few pairs of compression socks and gloves to keep your extremities warm, and not go as numb. Don’t forget a nice, thick beanie too. My dad used to say, “if your feet are cold, wear a hat”. If your head is protected from the cold, your whole body will be. I recommend getting a puffer jacket with a hood to protect your head and face (along with a beanie). I also recommend buying a cardigan and long thermal shirts that you can layer under the jacket. That way, when you’re inside and feeling warm, you can take off the jacket. And don’t forget scarves to keep you warm and stylish!
Bring snacks and research the cuisine of your destination.
This is if you have particular food allergies, intolerances, and sensitivities. I’m lucky that I do not (that I know of). But a lot of people with lupus flare up from nightshades (eggplants, peppers, and tomatoes). Some are even intolerant to garlic! (I would be so depressed if that happened to me). Research to see if there are any restaurants in your destination that will cater to your dietary needs. I know it’s hard to go gluten-free or nightshade-free in Italy, or vegetarian in the Philippines, but it’s possible. Don’t forget to bring snacks that are compliant with your body. And let your flight attendants know once you’re on the plane!
During the flight:
Take your medication during the same time you take it at home
Taking your medication while traveling can be confusing, especially if you are going far away. But take them like you normally would at home. For example: I take medications twice a day, at 9:00 am and 9:00 pm (21:00). When I’m on the plane, I would take it during those same times until we land and change time zones. Then I would change the times I take them (more on that in a bit).
Traveling with Lupus: During the trip
Time your medication to match the time zone you would take them at home.
I don’t know a better way to explain this, but when I was in NYC, I took my medication at 12:00 am and 12:00 pm since it’s only 3 hours away from California. Because London is 8 hours away, I took them at 5:00 am and 5:00 pm. I set multiple timers to alert me to take them. I already have alerts on my phone reminding me to take them an hour beforehand. When the time zone changes on our destination, the alerts on my phone change to match the time.
Remember to eat every few hours or so
I don’t know about you, but I get really, really lightheaded and anxious when I’m hungry. It makes me scared that I might get another seizure, when I’m just having a bad sugar crash. That’s why I can’t do intermittent fasting. When you’re running around exploring a new destination, you’re burning off a lot of energy that you will need to replenish. This would also go for people without a medical condition too.
Take breaks and sit down when you need to
This also kinda goes in hand with eating and snacking. Us people with lupus get more fatigued than average, and running around from Point A to Point B in unfamiliar territory is no joke. If you find yourself getting winded, find a bench to sit on, and relax until you’re ready. Stay present and take in the fact that you’re in another destination, another state, another country! All too often with travel, there’s pressure to do all the things, visit all the tourist points. It’s understandable because you’re there for a short period of time. But sitting down and recuperating is a great time to reflect and tell yourself how grateful you are to be able to travel and galivant, despite your disease.
Traveling with Lupus: After the Trip
Take care of yourself in the best way possible.
It sucks. There is no cure for lupus. So you never know when you are going to flare or get into remission. While there is no cure, you can manage your symptoms to where you can live as if you are healthy. Keep going to your doctors regularly. Take your meds and don’t skip a beat! Eat as clean and whole as possible. Stay active. Stay out of the sun as much as possible (but if you absolutely have to be outside, wear sunscreen, a hat, and stay in the shade). SLEEP! I can’t stress enough how much sleep is important, especially for those with autoimmune diseases.
By taking care of yourself physically, mentally and emotionally, you too will be able to live your best life on horizon!
Hannah is a travel writer, graphic designer, and the founder/editor of Hannah on Horizon. She is based in Sacramento, California, living with her husband and two adorable dogs. She shares tips on how to experience luxury travel on any budget, and how to maximize time at each trip or destination, no matter what your budget or amount of vacation time at work. She enjoys making you feel like you have visited each destination with her through her storytelling and informative writing style.