A decade ago, I was on a trip with two of my best travel pals where we planned to scuba dive multiple times a day. My friends seemed to have boundless energy. They didn’t need a whole day to recover from the flights; their muscles weren’t spasming from carrying the air tanks into the water for a shore dive; their knees weren’t giving out as they navigated the rocks; they weren’t taking Advil every 6 hours just to stay upright or nursing their various maladies on the boat during surface intervals.
Alone in my room each night, with a Ziploc of ice on my neck, IcyHot on my back and propped up by pillows, I wondered why I was always hurting when others in the same situation seemed to be just fine. I was trying to live my best travel blogger life and yet again, I felt betrayed by my own body. I didn’t know anyone else my age who felt more like an octogenarian than a young thirtysomething.
The reality is that I’d been dealing with this pain my whole life. And I’d been to every doctor and run every test to get to the bottom of why I seemed to have significantly more pain and less energy than everyone else my age.
It would be another decade after the scuba trip before I finally found answers.
Traveling with a Connective Tissue Disorder: What It’s Really Like as a Hypermobile Traveler
Since 2006, I’ve been documenting my worldwide adventures here and across my social media accounts. From my active life as a publicist in New York City to all those long-haul flights as a solo traveler to road trips with my siblings and hiking in national parks with my husband, I’ve shared it all.
Well, not all.
What I haven’t shared is the invisible challenge I’ve been navigating alongside my travels. After years of unexplained health issues and fruitless, frustrating medical visits, I finally have an answer: I have Hypermobile Ehlers-Danlos Syndrome (hEDS) / Hypermobility Spectrum Disorder (HSD).*
*I’m mostly going to use hEDS here, but to grossly oversimplify a complicated topic, hEDS and HSD, for all intents and purposes, are more or less the same thing. (And they may actually be the same thing, but we don’t know yet. Clear as mud, right?) Healthcare providers tend to respond to the hEDS designation better though both have similar symptoms and co-morbidities and no real test to determine which is which. All that to say: I’ll be using hEDS here but the travel tips and suggestions may work for anyone on the hypermobility spectrum.
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a genetic connective tissue disorder that affects collagen, making joints overly flexible and prone to dislocation, subluxation and chronic pain. Connective tissue is found all over the body, in skin, muscles, tendons, ligaments, blood vessels, organs, gums, eyes – it’s everywhere. It is the most common of the 13 types of Ehlers-Danlos syndrome (EDS) and is considered an invisible disability – outwardly, you may look fine, but your internal systems are not cooperating.
Common Symptoms and Comorbities of Hypermobile Spectrum Disorders:
- Joint hypermobility (excessive movement beyond the normal range)
- Frequent joint dislocations or subluxations
- Craniocervical instability
- Chronic pain and fatigue
- Soft, stretchy skin that may bruise easily
- Poor wound/injury healing and atrophic scarring
- Common co-morbidities: MCAS, POTS, dysautonomia, IBS, ADHD/ASD, FD, etc.
Getting this diagnosis was not easy. It took me decades and countless doctor visits, tests and a shocking amount of money (thanks, American healthcare system!) to get here, so I decided to share in the hopes that anyone else asking all those questions I wrestled with won’t have to wait as long for answers.
The Long, Frustrating Road to Diagnosis
I’ve always been bendy. I was the kid who could “sit like a frog,” pop my shoulders and hips in and out, casually do backbends and weird party tricks. Even though I was very active as a cheerleader and a swimmer, and I was always in pain. As a teen and into college, I’d roll my ankles walking across campus, wake up with numb arms, have mysterious hip pain and deal with a neck that felt like it was constantly sprained. I learned to mask the pain and assumed everyone felt as consistently crappy as I did.
Like many people with hEDS or HSD, my journey to a diagnosis took decades. In hindsight, my symptoms are so obvious, yet, when I shared my struggles with doctors, I was met with the same responses:
- “Your tests are normal, so there’s nothing wrong.”
- “Probably anxiety or women’s troubles.”
- “Just lose weight.”
- “It’s just aging. Everyone gets aches and pains.”
- “Are you sure you don’t just want drugs?”
Because connective tissue is all over the body, this type of disorder can manifest as a variety of seemingly unrelated symptoms. I pursued each one individually with podiatry, gastroenterology, neurology, rheumatology, orthopedics, chiropractic, ENT, cardiology. I had cortisone shots in my feet as a teen, wore clunky orthopedic boots, faint at the most inopportune times, missed work all too often when I couldn’t turn my head and eventually had to stop going to the gym altogether because I was always getting injured. I’d try to fix one symptom only for another to pop up.
HINT: If you can’t connect the issues, think connective tissues
Because hEDS and HSD don’t show up on standard imaging tests like MRIs or X-rays, many doctors dismiss the symptoms as anxiety, fibromyalgia or the best one — hysterical woman. There’s also no genetic test for hEDS (unlike other forms of Ehlers-Danlos Syndrome), which makes diagnosis even more challenging. Instead, it’s diagnosed clinically — meaning you need a doctor who has actually heard of it, an all-too rare unicorn, and is willing to look at the whole picture, not just a bunch of seemingly unrelated symptoms.
Medical students are often taught to prioritize common diagnoses over rare ones, using the phrase “when you hear hoofbeats, think horses, not zebras.” Alas, it was a zebra all along. Why the Zebra?
Studies show that it takes an average of 10-20 years to get diagnosed with hEDS/HSD, and many people never get answers at all. By the time I discovered the Mayo Clinic’s Ehlers-Danlos Clinic and got my diagnosis, I had already figured out many of my own coping mechanisms, purely through trial and error.
Why Get a Diagnosis if There’s No Cure?
So why did I bother going to the Ehlers-Danlos Clinic at Mayo? That’s a common question people face when diagnosed with a health condition with no known cure.
Knowing my connective tissue is faulty helps me with symptom management, injury prevention and especially access to proper care. A diagnosis allows for targeted treatments like physical therapy, pain management and joint stabilization strategies while also making it easier to address comorbidities such as POTS, MCAS, dysautonomia, gastrointestinal issues, etc. with my healthcare providers. Suddenly I’m not an “anxious woman” as an ER doctor once wrote in my chart. There’s actually an explanation to every malady, and that’s been both validating and frustrating. I always thought I was just too sensitive to pain or unusually clumsy or a giant baby or “morbidly obese” (as one doc once put it, when I was 20 lbs. lighter than I am now), but my connective tissue issues have been running the whole show undetected all this time.
Plus, there are things I absolutely should not do with hEDS – things I might have pushed myself to do (for the plot – like bungee jumping) or just done without realizing the consequences. Contact sports, high intensity training, marathons, taking the antibiotic Cipro as prescribed, certain birth control, Lasik, commonplace surgeries (looking at you, appendectomy) and even pregnancy are all potentially disastrous situations for someone with faulty connective tissues and the various comorbidities. Even chiropractic care and certain yoga poses can cause months of pain.
People think extra flexibility sounds great – like, what’s the problem, right?! But hypermobility is not just bendiness. There’s so much more to it. It means constant instability, pain and a higher chance of getting hurt doing things that absolutely should not get me hurt. Fatigue from my system overcompensating just to stay upright is part of the deal, and no matter how much sleep I get, I rarely feel rested. Jet lag is a full body, multi-week recovery experience. Even simple things like standing in line for TSA, walking from gate to gate in the airport or sitting in one position too long can be excruciating.
Ironically, my career as an adventurous travel writer is often in direct opposition to what I *should* be doing to keep my body safe. Activities like zip-lines, long hikes and – gasp – carry-on luggage are all a bad idea for me. And all of this is completely unpredictable. One day I might feel like walking 10,000 steps and having 24 meetings; and the next, Rick has to lift me out of bed.
Since diagnosis, I’ve made choices to protect my body, much more than I ever allowed myself to before, if that makes sense. Now I don’t gaslight myself that I’m not really in pain or I should be able to keep up physically with everyone else. (Ok, that’s not entirely true. You know I just did that 8-mile hike in Kauai 5 months ago and yes, I am still hurting.)
Now that I have an official name for what I’ve been dealing with, a lot of my past struggles – injuries that won’t heal (do y’all remember the time I had to wear that hideous orthopedic boot for 4 months in NYC?!), dislocating my finger last year while pulling weeds, feeling like my body wasn’t keeping up with my ambitions – make sense.
As someone who travels full-time for work — and has to navigate airports, hotels, long drives, hard beds and changing routines regularly — I’ve learned a lot of tricks to make travel more manageable. Instead of dwelling on the frustrations, I want to talk about how I’ve adapted my travels over the years, often without realizing why these changes were helping me.
Traveling with Hypermobility & Chronic Pain: How hEDS/HSD Affects My Travels
The symptoms from hEDS have never stopped me from chasing adventure, but they’ve definitely slowed me down. Before my diagnosis, I often wondered why travel felt different for me than it did for my travel besties blessed with functional connective tissues. They don’t limp off flights, injured just from the act of sitting too long. They don’t see stars every time they stand up. And so often, I’m the one holding everyone up at baggage claim because they are carry-on only. Now, I recognize that my body requires a different approach to stay comfortable and functional on the road.
Living and traveling with hEDS means constantly managing pain, preventing injuries and making choices that others don’t have to think about. It’s exhausting, unpredictable and hard to explain – which I hope sheds some light on why I have never really mentioned it until now.
But the good news? I’ve learned how to work around many of these challenges and still do what I love.
How I Manage Travel with hEDS/HSD: Travel Hacks for Hypermobile People
It wasn’t until I was diagnosed with hEDS that I finally had language for what was happening in my body. Whether I realized it or not, many of the habits I’ve developed over the years have been essential in keeping me on the road. None of this is medical advice, especially considering hypermobility is a spectrum and everyone’s body is different, but here’s what has made the biggest difference for me:
Checked Bags Only
Remember that year I traveled around the world, when I bought a rolling suitcase with backpack straps? I always knew I wasn’t cut out to be a backpacker but I never realized it was because I can’t use a backpack! Any bag with straps on my shoulders or neck is a no-go for me, no matter how light the bag. And lifting a suitcase over my head into a bin could be fine, or my ribs could slip out of place and all the plans I had for my trip are out the window and I haven’t even landed yet.
I used to push myself to be the “carry-on only” traveler, but I’ve learned that a good rolling suitcase checked in before security saves my joints from unnecessary strain and potential subluxations. Thank goodness I’m Platinum Pro on American Airlines and don’t have to pay for luggage, and sometimes I even get an upgrade to First Class. Roomier seats help with the pain, too, because I can move around more easily.
The Right First Aid Kit
Yes, I bring a whole packing cube filled with stuff I might need to function – can you believe I used to be ashamed of this?! Things like compression socks, knee braces and kinesiology tape help stabilize my body during travel days, and all the other goodies help as issues arise. I pack extra medication in case of travel delays, and those go in my carry-on always.
Click for a shoppable list of everything in my medical bag
Always Pack Proper Footwear
Prioritizing shoes with good arch support and cushioning to reduce impact on my joints has made all the difference over the past few years. Support is more important than style these days. Fortunately there are way more cute cushiony shoes now than there used to be! I am a big fan of The Walking Company.
Staying Mobile
Sitting still for too long makes my joints stiffen and swell, so I try to stretch and move regularly on flights and road trips. Those AA upgrades come in really handy because the First Class seats actually leave a little room to wiggle without touching your neighbor. (I had a fellow passenger actually tell me off once for moving too much so I’m always conscious of it now.)
No Red Eyes
See… I say “no red eyes,” but realistically sometimes they can’t be avoided. If at all possible, I try to avoid having to sleep on planes unless I have the luxury of lying flat or at the very least flying first class.
Unfortunately, I have yet to find a neck pillow or lumbar support that alleviates the pain I get on flights, so if I do fall asleep on a flight, it tends to leave me in a lot of pain. Drop me a note if you have suggestions!
Don’t Forget Nutrition & Hydration
I am the worst at both of these things, so this is more a reminder to myself than a brag on what I actually do. It helps to bring an empty water bottle through TSA and then fill it up afterward – I’m so cheap when traveling that I’d die of dehydration before I spent $8 on a bottle of water. I also bring electrolyte packets to prevent dizziness and stave off fatigue. And I always, always have some snacks in my carry-on in case of emergency – either being stuck on the runway in a snowstorm for 5 hours (yes, that’s happened) or just having a blood sugar situation that requires quick calories. Nuts and KIND Bars travel well.
Another tip: trip prep for me really needs to start a week in advance. Hydrating extra, making sure I’m getting my vitamins and eating well all help to make travel smoother and less likely to lead to a flare up.
Pacing Myself & Prioritizing Rest
I used to plan my travel like I was a contestant on The Amazing Race — sunrise excursions, 8-mile walking tours, 4 cities in 5 days. My motto used to be “You can sleep when you’re dead.” It’s a wonder I made it to my 40s with that attitude. I used to fly to Europe on a red eye, then dive straight into a 10-day non-stop itinerary with no sleep. And I wondered why I was then injured and sick for months afterward. Long travel days, hours of walking and carrying heavy bags are almost a guaranteed injury. You may notice I travel much less than I used to and I’m very cautious about the marketing campaigns I do and that’s 100% directly related to my health.
Now I try to build rest days into my itinerary, to make sure I leave room for sleeping and relaxing and to honor my body’s limits. If I need to adjust plans, slow down or take a day off, I try to allow myself that flexibility.
- Rest days between major travel days
- Hotel check-in days where I do absolutely nothing
- Shorter outings with seated breaks
- Flexible scheduling with room to cancel or swap plans
This is one reason it’s tough for me to travel with a group. I would rather break my own hip (and that’s a possibility) than slow everyone else down and I struggle with guilt about not doing everything a destination has to offer. I’m still learning to advocate for my needs and to accept that I do have limitations and that’s not a burden on others. At least, it shouldn’t be.
Take Advantage of Available Assistance
Another thing I have struggled with! But I am working on not being shy about requesting:
- Wheelchair assistance at the airport if I need it
- Extra pillows or a room near the elevator
- An aisle seat or early boarding
- Support from my travel partners if I’m having a flare
It’s not “making a fuss.” It’s preventing injury and fatigue so I can actually enjoy the trip. I’m working on giving myself grace in those situations.
Pay More for Comfort
The “hypermobility tax” isn’t cheap. It’s so much more expensive to choose the First Class flight or the centrally located hotel, but the days where I sit in a middle seat, take 4 buses and an overnight train, then stay in the cheapest accommodations 40 miles from town are over.
Staying in a centrally located hotel helps me conserve energy for the important stuff. Taking a 45-minute flight instead of a bunch of buses and trains saves so much strain on my body. It all comes down to strategy, and that’s just an extra level of planning and expense that comes with the diagnosis. I may have to take fewer trips ultimately, but I suffer less, so that’s where I’m at.
Traveling with a chronic condition almost certainly adds to the bottom line of a trip’s cost; but I can either pay more upfront or spend my precious vacation time in pain.
Moving Forward as a Hypermobile Traveler
Now I know what was really going on, and has always been going on, my whole life. This diagnosis hasn’t changed my love for travel – it’s just helped me understand my body better and travel smarter. If anything, I feel empowered knowing that I’m not just imagining my struggles, and I can now be more intentional about managing them.
My adventures aren’t less valid because of my limitations, even if my go-go-go travel lifestyle doesn’t necessarily match up with the way my body works.
For anyone else navigating travel with chronic pain or hypermobility, know that you’re not alone and that adventure is still possible – it just might require a few adjustments along the way.
Have you experienced similar challenges while traveling? I’d love to hear your tips and tricks for making travel more comfortable! Let’s share and learn from each other.
Resources for hEDS / HSD Travelers
Traveling while Hypermobile FAQ
What’s the difference between hEDS and HSD?
From the Ehlers Danlos Society: Since there is not yet a definitive diagnostic test for HSD or for hEDS, there is no way to absolutely differentiate between the two conditions. Some experts believe that HSD and hEDS are in essence the same condition along a spectrum, some are not sure, and others think that HSD and hEDS are separate, distinct conditions. It is possible that hEDS and HSD have different underlying causes and that they are truly distinct from each other and from other disorders. It is also possible that hEDS and HSD have a common underlying cause and are not truly separate conditions.
HSD, just like hypermobile Ehlers-Danlos syndrome (hEDS) and rarer types of EDS, can have significant effects on a person’s health, whether this is related to their joints or to co-morbidities. Among the most common of these concerns are nausea, vomiting, acid reflux, bloating, pain, absorption and food intolerance concerns; autonomic disturbances of heart rate and blood pressure, bowel and bladder function, and temperature regulation; anxiety, depression, and phobias; and organ / systemic inflammation related to mast cell activation. These associations are very real. They seriously affect quality of life, and they need to be managed.
Have you tried yoga, anti-inflammatory diet, vegetarianism, carnivore diet, vitamins, beet juice, green juice, smoothies, collagen supplements, glucosamine, probiotics, avoiding processed foods, meditating, prayer, acupuncture, vitamin A, B, D, C, E, K?
Yes.
Is HEDS considered a disability?
Ultimately hypermobility is a spectrum and can be fully disabling or asymptomatic. It is classified as a disability because it can significantly impact daily life and mobility.
