Sjogren's & Travel: Manage Symptoms & Thrive on the Road
That feeling when you first start planning a trip? The excitement, the dreaming, the adventures ahead! And then, if you’re like me, a second feeling creeps in: the fear, the dread, the anxiety. As a physician and Sjogren’s patient who loves to travel (even with three kiddos, which is truly like parenting in the wild!), I understand that mental checklist of "what ifs."
What if my dry eyes flare up on the plane?
What if I run out of mouth lozenges?
What if I’m so fatigued I can't enjoy the things I've planned?
Suddenly, the joy gets overshadowed by a mountain of overwhelm. I call this the travel treadmill, and it’s a symptom of a much bigger problem. But today, we're stepping off that treadmill! Travel with Sjogren’s doesn't have to be just about surviving; it can be about truly thriving.
Your Mindset: The Ultimate Travel Prep
Before we even talk about packing lists, we have to start with your mindset. The most important tip I can share is to reframe travel. It's not just about a vacation; it's an active rebellion.
I had the honor of giving a TEDx talk a few years ago. During that event, I met an incredible travel blogger whose talk still resonates deeply. She taught me that when we take a trip, we actually experience three trips:
The Anticipation: The trip we imagine, the expectations we set.
The Actual Experience: Being in the moment, from hustling through the airport to reaching our destination.
The Memories: How our brain interprets the experience and forms lasting recollections.
When we’re on the "travel treadmill," the dread from Sjogren’s tries to shrink our world. It puts us in a state of hyper-vigilance. We need to reclaim our right to experience joy and adventure. When we rebel against limitations by planning with intention and confidence, we rise above this disease, proving that no matter what comes, we've got our own back.
This isn't just about packing eyedrops (though that is helpful!). It’s about strategically planning so you can free up your mental and physical energy to actually enjoy the trip you're on.
Pre-Trip Prep: Your Health Expedition Briefing
Great travel starts before you even leave the house. Think of yourself as the CEO of your own health expedition. Here’s your pre-trip briefing:
Your Mobile Pharmacy:
Non-negotiable: Gather all your prescription medications (pilocarpine, hydroxychloroquine, low-dose naltrexone, etc.).
Always pack extra days' worth. Delays happen!
Carry-on only! Never put essential medications in your checked bag. I'm a little superstitious about this – keep them with you, and it wards off badness!
Your Symptom Relief Toolkit: This is your comfort kit!
For your eyes: Think in layers! Preservative-free artificial tears for daytime; a thicker gel or ointment (like Lacri-Lube) for nighttime, especially in a dry hotel room. A sleep mask can also help block light and protect eyes from direct airflow.
For your mouth: Bring your arsenal of saliva substitutes, sprays, or xylitol-containing lozenges (my personal favorite!). Xylitol stimulates saliva and helps fight cavities – a double bonus! (And yes, I have content on my blog about why those xylitol headlines were overblown, don't worry.) Oral hygiene is crucial on the road, so pack your soft toothbrush, fluoride toothpaste (Dr. Jen’s Super Paste is great!), and floss. I also pack my tongue scraper – keeps everything in a better place.
Your Medical Info Packet: Your safety net! On a single sheet of paper, or as a PDF on your phone, list:
All your medications.
Key diagnoses.
Major allergies (include what happened and when it occurred for each).
Contact information for your healthcare team.
This is invaluable in a medical emergency away from home.
Managing Symptoms on the Go
You’re packed, you’re on your way! Now, here’s how to manage your symptoms in real-time:
Dry Mouth Hacks:
Carry your refillable water bottle everywhere. Don’t wait until you’re thirsty!
Stimulate saliva with xylitol lozenges or sugar-free gum.
Be mindful of dehydrators. Alcohol and excessive caffeine can worsen dry mouth. For every dehydrating drink, add an extra glass of water and ensure you’re getting enough electrolytes (salt helps too!).
Dry Eye Oasis:
On a plane, point the overhead vent away from your face.
In a hotel, run a hot shower for a few minutes to steam up the bathroom.
Consider a portable travel humidifier.
Protect your eyes from elements with wraparound sunglasses (they block wind and dust!).
Practice the 20-20-20 rule if reading or using screens: every 20 minutes, look at something 20 feet away for 20 seconds. This reminds you to blink and rests your eyes.
Pace Yourself (The MOST Important Rule!):
Fatigue, travel, and jet lag are REAL. For jet lag, estimate one day of re-acclimation for every time zone crossed.
Build in rest periods. You don't have to see every single site! If you're at a theme park, plan lighter days, take midday breaks, and maybe go back in the evening.
Honor your body’s limits. This is a key part of that rebellion we talked about. I remember flying to Mexico City for a work trip – it’s at a high altitude! After a stressful journey and intense work, my body was done. Instead of pushing to see a museum, I chose to rest in my hotel room. It was a gift to just "veg" and allowed me to recharge.
These tips are a starting point – that 20% of actions that give you 80% of your comfort and confidence while traveling.
Traveling with Sjogren's requires a little extra planning, but it's absolutely possible to do so with joy and comfort. Be prepared, be kind to yourself, and remember that you are driving that plane. You deserve to see the world, make memories, and live a full, vibrant life.
