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.