Hi, my name is Caet. I am an Appalachian Trail, Pacific Crest Trail, and Colorado Trail thru-hiker. I’ve hiked every trail in the Smokies and spent one really long day in Linville Gorge to claim an FKT. I am also a zebra.
The Ehlers Danlos Syndromes are a group of rarely diagnosed connective tissue disorders that vary widely in how they affect the body and in their genetic causes. The EDS community adopted the zebra as its mascot because medical students are often taught, “When you hear hoofbeats behind you, think horses, not zebras.” After 13 years of searching for a diagnosis, I turned out to be one of those unexpected zebras.
Last year I was diagnosed with Hypermobile Ehlers Danlos, the most common type of EDS. I started experiencing symptoms and using braces to assist my hypermobile joints in my teens. Although I experienced symptoms early on, my hEDS really began to manifest when I became active in my early twenties. I spent eight years searching for answers about my chronic joint pain without much luck.
During that time I adjusted my activity level to my worsening joint pain. I loved running long distances until I couldn't anymore. So I started hiking long distances until I couldn't anymore. I hiked the Appalachian Trail, the Pacific Crest Trail, the Colorado Trail, the Northville Placid Trail and the Foothills Trail. When long-distance hiking became too painful, I turned to peak bagging and day hiking, completing the Catskill Mountain 3500 Club, the Adirondack 46ers and 10 rounds of the South Beyond Six Thousand Feet, as well as hiking all the trails in Great Smoky Mountains National Park.
Pain was part of my daily life but I had no answers so I simply worked with and around my pain. Over this time period, I sought the help of nine physical therapists and six physicians until, with diagnostic criteria clutched in a sweaty palm, I demanded to see a geneticist.
One year later I am still navigating the physical and emotional effects of a late diagnosis of EDS. Physically, I am feeling the effects of the past decade of rigorous activity with increased joint pain and connective tissue degradation. Emotionally, I am still grieving the loss of my health and trying to adjust to my decreased activity level after being so active for so long.
My chronic illness has greatly affected what I can do and how I interact with the outdoors. It has also shown me that the trail will always be there, in any and every capacity, at every stage of life.
When I first began thru-hiking, I adopted the “purist” mentality that runs rampant on well-marked East coast trails like the AT. Hike every blaze, no matter what. While I am grateful for that time in my life and the challenges it showed me, my chronic illness has shown me that inclusivity is more important than purity.
If you need more time to hike your hike, flip flop. If you’re in pain, slackpack. Aqua Blaze Virginia. Take the Rim Trail and the Eagle Creek alternate, I hear they’re way more scenic. Stretch every night at camp and carry a Nalgene because they make great “foam” rollers. Oh, and don’t let anybody make fun of your Hokas (even though they do look like moon shoes and objectively they are very funny)!
But seriously, we as a hiking community can have a little more grace. Toward our fellow hikers AND our own selves and our own bodies. None of us are impervious to the passage of time, chance, or genetic makeup. Injury and illness, both chronic and acute, are a part of life. Let’s make it easier to embrace them, not just through more accessible trails but also within the greater hiking culture.
My joints don’t have the stamina to hike thirty-mile days for a couple hundred miles anymore. I can still enjoy spring wildflowers in the Smokies. I can still park my van on an overlook on the Blue Ridge Parkway at 5,000 feet and breathe in the fresh air of the Blue Ridge Mountains around me. It may look and feel different, but the trail is still there. As wild and wonderful as it's always been.
Thanks so much too. I need to embrace this mentality as I manage chronic pain too, and knock on anxiety/fear. It’s about the enjoyment and experience, not performance measurement. Let’s do this!!!
Thank you for sharing this.
I don’t have a chronic illness or mobility limitations, but I have friends & loved ones who do. I see how exhausting navigating the world is for them: feeling like you have to explain, how much do I explain? are my friends weary of my canceling plans? should I even bother making plans? People are quick to offer advice (that’s never helpful) but slow offer any tangible help or even to know when to shut up. (People with chronic health conditions are already experts are treatments & palliatives. It’s virtually impossible that they haven’t heard of what you’re recommending. Unless you’re a very close friend or a medical professional with experience in treating their condition, don’t offer suggestions.)
We can all grant others a little more grace. Be kind. You never know what kind of battles that other person has fought or what they’re going through right now.
It’s so wonderful to see someone speaking up about their experiences with chronic illness on trail. For better or worse, thru-hiking culture and advice overwhelmingly assumes youth, health, and only temporary repercussions to pushing through physical pain. I can’t rely on those assumptions. On top of the every day struggle of managing medications, self-care, and the psychological toll of having a significantly increased risk factor for doing anything other than sitting inside a house in a city near a hospital, I’ve often felt alone and confused when planning to accommodate my medical needs during a thru-hike. Doctors are oath-bound to advise me not to go. Forums are full of 20-somethings who find it hard to believe that anyone with shoulder or back problems, let alone more serious medical issues, should be backpacking. I go anyway. I’m glad I’m not the only one.
I was drawn to your picture on your van and as I read your story, I can totally relate. Been hypermoblie all my life and while it didn’t present as a problem as a dancer and doing yoga all those years, as I am in my 60’s now it does. I’ve had 2 full thickness rotator cuff tears and surgeries and another this Friday, I ‘ve had two torn meniscus repairs and my bladder is.not being helped by any connective tissue- I’ve talked to my Drs, to my surgeons- no one knows but one Doc talked about EDS and Zebras as well. I have not actually been diagnosed- but as I continue to love kayaking, rafting, long distance canoeing,, all kinds of cycling, and 3-12 day backpacking trips, I am definitely having to curtail activities. So kudos to you for continuing being strong on your journey! I too will always continue being in the wilderness to the point that I can!!!
As a fellow Zebra thank you so much for posting this! I leave in a week for the PCT (my first thru hike) and this is a great reminder to listen to be body and be confident in what works for me. I have looked so hard for info on long distance hiking with EDS/ chronic illness in general and there is so little that I have found so thanks for putting your story out there. Good luck with your new diagnosis!
Thank you for sharing this and as a fellow zebra, I really need to read this! I used to hike, run, mountain bike, white water kayak and generally loved being really active. I was diagnosed five years ago and still have difficulty with being not as active. My border collie brain is stuck in an arthritic pug body and it drives me a bit crazy from time to time. Why can’t I hike 15 miles in a day or bike 50 miles in one go anymore? What happened? I’ll keep trying to enjoy nature every chance I get but I hope when other hikers or cyclist see me with my knee brace on going slow, they understand!