Being sick sucks. Whether it’s the flu, Covid, or some mysterious but no less nasty “stomach bug,” they all suck, just in varying degrees of misery. But being chronically ill? That’s next-level bullcrap. Throw in a condition no one can physically see, and you’ve basically got a recipe straight out of Satan’s cookbook.
For me, my invisible illnesses are like that one coworker everyone thinks is an angel, but I know is a total a-hole. They look sweet, innocent, and 100% worthy of a raise on the outside, yet behind the scenes, they’re sabotaging everything. What a d*ck!
I have Hypermobile Ehlers-Danlos Syndrome (hEDS), a “rare” genetic disorder (meaning I was born with it) caused by collagen that refuses to behave like collagen. Collagen is everywhere in your body—it’s the glue that keeps your joints, organs, and skin together. When it misbehaves, things fall apart. People with EDS experience a wide variety of symptoms: dislocations, subluxations (when a joint slides out of place without fully dislocating), chronic pain, gastrointestinal issues, racing heartbeat upon standing, mast-cell problems (aka histamine chaos), brain fog, fragile skin, early-onset arthritis, and fatigue. And, bonus round—we tend to collect neurodivergent diagnoses with the same amount of hysteria that ’90s kids collected Beanie Babies.
There are 13 known types of EDS, most of them extremely rare. But hypermobile EDS (Type III) makes up about 90% of cases. Despite outdated medical literature still floating around online, recent data suggests it affects about 1 in 500 people. So, yes, you’ve probably met someone with EDS, even if they didn’t know it. Because hEDS exists on a spectrum, no two people experience it in the same way, including a mother and daughter.
In my family, it runs like a hidden inheritance. I got it from my mom, who got it from her mom, who got it from her dad. Every child of someone with hEDS has a 50% chance of inheriting it – a proverbial coin toss that can have life-long implications. Nobody in my family knew they had EDS, including myself, until one day I decided to do the research and piece the puzzle of unexplained symptoms together at the age of 30. I’ve since had it clinically confirmed by my small army of a dozen or so doctors.
Not a day goes by that hEDS doesn’t affect me. And yet—I carry on. Don’t get me wrong – it’s not easy. Some days, it feels damn near impossible. But I have learned the importance of being kind to myself and fully appreciating life’s little joys. Take, for instance, the hours I have already spent composing this article. I truly enjoy writing, even if nobody ends up reading my work, but, to be perfectly honest – as I feel my normally good wrist tingling, my horribly arthritic jaw aching, the nerves in my neck throwing an unscheduled protest, and a migraine knocking at the door this very moment – the process is mentally and physically… let’s say, “taxing”. I only have so many metaphysical “spoons” of energy to use in a day, and writing and working on this website requires a majority of my daily allowance. But, despite the pain and exhaustion it causes, I persist because writing is one of my life’s little joys.
So why am I sharing all this personal medical history with you? After all, this is a travel blog, not a woe-is-me blog. Well, the answer is simple: travel is my life’s BIGGEST joy. In fact, I don’t think it’s presumptuous of me to believe many people with chronic illness dream of traveling but feel it’s out of reach. I’m here to tell you it doesn’t have to be. So, how do I do it when my body often refuses to play nice? Let’s get into it.
Know Your Limits (and Your Worst-Case Scenario)
The most important rule: know your limits—and know what happens if you push them. Then, have a plan for treating yourself if the worst happens.
At the moment, I think my nightmare scenario while traveling is that I throw my neck out again, even if it’s just by performing the epically difficult task of rolling over in bed. If it’s bad, I can’t turn or straighten it. So before a trip, I try prevention: chiropractor visits to get my neck, back, hips, ankles, and wrists in the best shape possible. If prevention fails, I rely on Plan B: over-the-counter anti-inflammatories, prescription muscle relaxers, and—if necessary—rest days.
This is why I rarely spend less than 4–5 days in a new city. I always build in a “free day” or “sick day.” Flexibility is non-negotiable. If possible, avoid locking yourself into specific-day reservations. Remember, if your itinerary can breathe, then so can you.
Pack for Problems You Might Have
If you’ve ever needed a medication, brace, or device (even once), assume you’ll need it again while traveling. I always pack ankle braces, foot powder (to prevent blisters), and Zyrtec (allergies strike when you least expect them). Around hotels, I wear sandals to avoid breaking toes on bed frames or wrapping them around stray chair legs — lesson learned the hard way. But on city streets, only supportive shoes like my Hokas make the cut.
Medications & Carry-Ons
Always carry your most important medications and medical devices (CPAPs included) in your carry-on. Assume that checked luggage will get lost. By law, medications and medical gear don’t count against your carry-on allowance, but bring a doctor’s note just in case you have any questions from airport security.
Also—know the rules. Some medications, like my Adderall, are restricted or even banned in certain countries. Sometimes a doctor’s note is enough. Other times (e.g., Singapore), you need government approval weeks in advance.
Travel Insurance (Yes, Really)
If you’re traveling somewhere with limited medical care, invest in travel insurance that includes medical evacuation. Honestly, I recommend this for everyone, chronic illness or not.
My Final Thoughts
Traveling with chronic illness isn’t about ignoring your condition—it’s about outsmarting it. Prepare for your worst-case scenario. Build flexibility into your plans. Pack more medical supplies than you think you’ll need. Bring documentation. Get insurance. But, most importantly of all: Don’t give up on your dreams! Illness changes the way we travel, but it doesn’t have to stop us from seeing the world. With preparation, patience, and a little stubborn joy, you’ll come to realize that adventure still awaits.