Here’s advice from someone who’s done it. A lot.
If you live with a chronic illness, there’s no such thing as taking a vacation from looking after yourself—even when you’re, you know, actually on vacation. I say this as someone who’s been traveling with type 1 diabetes for 21 years (I was diagnosed at age seven), taking incredible trips from Vietnam to Italy to Nicaragua and more.
No doubt, being diabetic means you’re going to be traveling with some extra baggage in both the literal and figurative senses. “Going on a trip can be anxiety-provoking as it is. Throw in a chronic disease, and it can become a big deal because there's so much more to think about with both your trip and your health,” Mary Vouyiouklis Kellis, M.D., an endocrinologist at the Cleveland Clinic, tells SELF.
But, as I’ve figured out over the years, there are ways to make the experience a whole lot easier for yourself. Perhaps unsurprisingly to anyone with T1, it mostly involves a lot of planning and preparation. “It’s really important to pre-plan when you have diabetes so you’re better prepared to take care of any situation that might arise,” Dr. Vouyiouklis Kellis says.
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So, for all my fellow T1 travellers, here are a few doctor-approved (and me-approved) ways to set yourself up for smooth sailing on your adventures.
1. Make a pre-trip appointment with your endocrinologist.
“It’s a really good idea to see your endocrinologist [a few] weeks before your trip so you can come up with a travel plan together,” Dr. Vouyiouklis Kellis says.
You probably won’t want or even need to see your doctor before every trip, especially once you get the hang of things (which will happen pretty quickly if you’re someone who travels a lot). But if you have any questions, uncertainties, or pre-trip nerves, it’s absolutely worth the visit. There are also a few situations in which you should definitely check in with your endo, like if you’re taking your first trip since you’ve been diagnosed or your first trip in many years; you’re going somewhere for an extended period of time; or you’re going on a physically strenuous or geographically isolated trip (like backpacking in a remote area).
Your doctor can help you figure out how your day-to-day diabetes management may change while you’re away. The best way to get practical, tailored-to-you medical advice is by talking to someone who knows your medical history, where you’re going and for how long, and what you’ll be doing, Dr. Vouyiouklis Kellis says. “It’s hard to give [general] recommendations for specifics on things like how to adjust your insulin because it is so variable,” she explains.
Let’s say you tell your doctor that you have a lot of walking tours through quaint local towns booked for the mornings, which is also when your blood sugar tends to run low. Your doctor can then help you figure out a temporarily reduced basal insulin rate to keep your blood sugar stable. Or maybe you’re off to Italy and know that pasta does a number on your blood sugar, so your doctor might advise you to up your dinnertime insulin ratio a little. (Talking with your doctor about the food situation on your trip can be a smart idea no matter what, since properly navigating what you eat is such a big part of living with either type of diabetes.)
Your doctor can also help you plan for what you will do in case of a potential emergency, like if your insulin pump malfunctions while you’re traveling. Maybe you and your doctor will already have figured out how many units of long-acting insulin you’d need to replace your basal insulin rates when dealing with a wonky pump, along with the ratios of short-acting insulin you’d need to cover carbs or correct for high blood sugar. This kind of situation is a lot less scary if you already have your plan B on paper.
Beyond that, this visit is also a good time to ask about any vaccines you might need while traveling, the Centres for Disease Control and Prevention (CDC) says. Even if you can’t necessarily get the vaccines you need at your endocrinologist’s office, they might be able to give you a heads-up about which ones will be necessary to stay as safe as possible. Two birds, one stone—you know the deal.
2. Pack twice as much of every diabetes supply as you think you’ll need.
Make a packing list including every single item you regularly use to control your diabetes: test strips, lancets, alcohol swabs, syringes, pump reservoirs, infusion sets, ketone strips, glucose tabs, the whole nine yards. Figure out how much of each you plan to use. Then double it.
I’ve always followed this simple rule of thumb, and it’s never let me down. If you don’t believe me, then take it from the CDC, which also recommends this tip.
Yes, this takes up a lot of precious luggage real estate. But I can assure you that sacrificing a beach read or your fourth pair of flip-flops is 100% worth it. Some travel scenarios can make you go through supplies faster than usual, like getting stranded somewhere for a few days or having to frequently test and treat unusually erratic blood sugar. Bringing twice as much stuff as you think you’ll need will help cover you in those situations. It will also probably give you some peace of mind. Running even slightly low on supplies can trigger enough stress and anxiety to ruin a trip. It’s hard to enjoy yourself if you think there’s a possibility you won’t have life-sustaining medical supplies!
3. Put your medical supplies in your carry-on.
Airlines lose suitcases. Every. Single. Day. So, yes, that massive arsenal of medical supplies needs to board the plane with you.
I’ve lost my luggage only one time, and it was just for two days. But on that one occasion—and the several times I worked myself into a panic at the baggage carousel, mistakenly thinking my bag was gone forever—I cannot even begin to explain how grateful I was to have all my diabetes care supplies in my carry-on. Again, these are the literal essentials necessary to keep you alive and healthy. They take priority over whatever else you want to carry on. (It also helps to have the biggest carry-on the airline allows, by the way, so that you still have room for some other stuff.)
If you’re going on a really long trip and physically cannot carry all your supplies on board, then pack half in your suitcase and half in your carry-on. You should have at least a week’s worth of supplies with you at the bare minimum, Dr. Vouyiouklis Kellis says. And no matter what, the CDC recommends bringing all of your insulin in your carry-on so it’s not subject to the extreme and potentially damaging temperature changes that can happen in the cargo area of the plane. (On that note, brush up on the care instructions for your diabetes medicine and equipment before traveling so you don’t accidentally do something that can mess up its efficacy, like leaving insulin in the sunlight by the pool.)
4. Mention your medical supplies to TSA before you go through airport security.
Airport security can be extremely stressful for pretty much anyone. That basically goes double if you’re traveling with medical devices and supplies. Fortunately, there are a couple of ways to make the airport security process easier for all involved.
What I’ve learned over the years is that communicating that you have diabetes ASAP will generally be to your benefit. The TSA recommends taking all of your medication and medical equipment out of your carry-on before it goes through screening and telling the TSA officer that you have some medically necessary supplies that will be going through security. Remember, you’re exempt from the 3.4-ounce liquid limit when it comes to medically necessary stuff like insulin and ice packs for said insulin.
The TSA doesn’t require that you carry all of your meds in prescription bottles or packaging, but they do recommend making sure all of your medication is clearly labelled to help things go more smoothly and quickly. Technically (and kind of surprisingly), each state has its own laws about prescription labels that the TSA recommends following when traveling through the United States. If you’re concerned, you can do some research about those laws based on where you’re headed.
5. Be ready for a pat-down in some cases (and budget extra time for security).
If you have an insulin pump and/or continuous glucose monitor (CGM) and will be flying to your destination, this one’s for you.
First and foremost, do not put an insulin pump or CGM through the X-ray machine because it could damage them, the CDC says. “I think a lot of people don’t actually know that,” Dr. Vouyiouklis Kellis adds. I didn’t for a long time! Most of the time, the TSA has either just passed my pump along without putting it in the X-ray machine, or they’ve required additional screenings. These additional screenings usually involve a pat-down of the pump that you can do yourself and an explosive trace-detecting sampling of your hands, the TSA explains.
Things get trickier when it comes to taking an insulin pump or CGM through metal detectors and body scanners. The TSA says it’s okay for insulin pumps and CGMs to go through both of these devices, but some manufacturers say body scanners can harm these medical supplies. I recommend reaching out to your insulin pump/CGM manufacturer to find out what they say about this or seeing if they have instructions online.
Even if the body scanner doesn’t harm your insulin pump or CGM, these devices may show up on the scan and prompt the TSA to pat you down anyway. To expedite things, you can just ask for a pat-down in the first place, the TSA says. You don’t have to take your devices off; just let the TSA know they’re there before the pat-down begins.
Another thing you can do: Print out a TSA Notification Card that you can hand to a TSA agent to quickly communicate that you have diabetes and are wearing a personal medical device. This won’t negate the need for a pat-down, but it might speed things up a bit.
As you can tell, the whole security process can take some extra time when you’re traveling with type 1 diabetes. To avoid contributing to travel anxiety, make sure you factor that in when deciding when you’ll get to the airport before your flight.
6. Bring a doctor’s letter and medication list on your trip.
In addition to being verbally communicative at security, Dr. Vouyiouklis Kellis recommends getting a signed letter from your doctor that states that you have diabetes and need to have your medical supplies with you at all times. “Hopefully, that can help deter any potential issues with TSA,” she says.
It’s also super smart to have a list of medications with you whenever you travel, Dr. Vouyiouklis Kellis adds. Although this can be included with your doctor’s note, you don’t actually need it for security, so it can be separate. Do whatever makes it easiest for you to have this medication list prepared for an emergency in which you need to get your hands on a medication like insulin while you’re abroad.
“In other parts of the world, they often have the same kinds of insulin, but it can have different names and come in different [bottles],” Dr. Vouyiouklis Kellis says. You can show your medication list to a pharmacist or clinician “so they can see exactly what you’re taking” and get around any language barriers, Dr. Vouyiouklis Kellis explains.
I know first-hand how useful this tip can be. I studied abroad in Italy for a few months in college, and toward the end of my stay, I was running pretty low on insulin. (I heavily enjoyed my carbs while I was there, as you do.) I saw a primary care doctor and showed him the type of insulin I was taking, and he gave me a prescription for the exact brand and bottle I needed. Had I been without that list, I’m not sure my beginner’s Italian would have helped me get my medication.
To make seeing a doctor for diabetes-related reasons even less stressful while traveling, the CDC recommends mapping out a few doctor’s offices or clinics/pharmacies close to where you’ll be located, along with learning certain phrases in the local language, like “I have diabetes” and “Where’s the nearest pharmacy?”
7. Test your blood sugar more often than usual.
Blood sugar levels can be unpredictable even on the most routine day of your life. When you travel, you’re changing a bundle of variables in that already delicate equation that can influence your blood sugar: your meal times, sleep schedule, internal clock, exercise routine, activity level throughout the day, and more. “Just the stress and excitement of travel can do it too,” Dr. Vouyiouklis Kellis adds.
Although you can probably anticipate and prevent some of these changes—especially with the help of your doc—it’s impossible to predict exactly how your blood sugar is going to respond while you’re traveling. With that in mind, it’s wise to keep closer tabs on yourself than usual and test your blood sugar more frequently, Dr. Vouyiouklis Kellis says. (If you’re wearing a CGM, make sure audible blood sugar alerts are on if possible or look at it more often.) You should also make sure to check your blood sugar before a physically demanding or really time-consuming activity like a hike or a tour, Dr. Vouyiouklis Kellis adds.
I know that traveling with type 1 diabetes can put a lot of added stuff on your plate. But as someone with type 1 diabetes who’s visited 18 countries and counting, I promise that (safely) satisfying your wanderlust is possible with the help of these tips.
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