I was nineteen when I was first introduced to ankylosing spondylitis. Like so many others, those two difficult to pronounce (and even more difficult to spell) words changed the direction of my life. At the time I received my diagnosis, I was on the brink of my twentieth birthday. I was a healthy and fit young man, just starting my college basketball career, looking forward to a long life of adventures ahead. With two words, my rheumatologist flipped my world upside down.
But this isn’t a sad story.
Since my diagnosis twenty years ago, it’s been quite a journey with AS. I have my good days and bad. I’ve experienced years of blissful dormancy and season-long flares that have brought me to my knees. It hasn’t been all roses and applesauce, but if someone would have told my nineteen-year-old self all that I know now, those first few years following my diagnosis could have been a little less rough.
My message to young people trying to make sense of their AS diagnosis is simple: hope and optimism. There are so many reasons to be hopeful and optimistic.
“Spondy,” as I like to call it, is not a one-size-fits-all disease. My father has AS, as does my uncle, as did my grandmother. We’ve all experienced vastly different symptoms and severity of flares. With that said, we come from a family of athletes, and we’ve all remained active, believing the best lotion for our joints is motion. Twenty-year spondy tip number one: keep moving.
Like so many others, I’ve tried anti-inflammatories and biologics, but unlike a lot of people, I never tolerated medication well, so I’ve gone rogue in my spondy journey. With the exception of a few experiments that lasted less than three months (in the midst of nasty flares), I’ve been biologic free. And because of a super rare clotting disorder, I’m no longer able to take anti-inflammatories. Talk about a bad break, yeah? Isn’t telling a patient with AS that he or she can’t take anti-inflammatory medication a little like telling a fish it needs to stay out of water?
I don’t share this to encourage people to get off their meds, because I know for many biologics and anti-inflammatory medications are what keep them moving. I share this so people don’t go down the same dark hole I did early in my diagnosis, fearing everything I read, believing everything I was told. We humans are remarkably adaptable. What works for me, may not work for you and vice-versa. Living with spondy is simply a more painful, stiff, and exhausting version of life: we adapt, we adjust, and we regroup. We wake up each morning and challenge ourselves to meet the day with some semblance of character, courage, love and grace. We don’t let our limp (if you’ve got one) define us. Instead, we allow our essence, our core values, our gritty and resilient spirits to represent who we are and what we’re about, because we are not our ankylosing spondylitis.
It’s been twenty years since my diagnosis. I’m still a healthy and fit—albeit slightly older and stiffer—young man. I eat clean, don’t use alcohol or drugs, exercise regularly (most often daily) and practice delicate care when needed. I’m curious about my disease and willing to try new things. I’ve got a good rheumatologist, a phenomenal physio therapist, a brilliant naturopathic doctor, acupuncturist and massage therapist and most importantly, a great counselor. Twenty-year spondy tip number two: build your team. We aren’t all professional athletes that can afford to have our team on deck day after day, but maintenance during good times and triaging during flare ups are critical pieces in navigating the spondy gauntlet.
I’ve read many times that ankylosing spondylitis is an invisible disease. I think this is true. It takes a gritty, resilient, and courageous soul to keep on moving through the symptoms that come with ankylosing spondylitis, symptoms that most often aren’t seen by others. I vividly remember a time immediately after my diagnosis, when I was unable to work, play basketball, or sit through fifty-minute classes. I was struggling with my first bout of depression as my identity had always been my physical self. That to me is the hardest part of ankylosing spondylitis, chronic pain, or anything that changes how we perceive ourselves—the loss of identity and the need to embrace the remake. I remember feeling like I’d rather have lost a limb, or been battling some form of cancer, because at least people would rally, people would “get” it. Twenty years later, there’s still a part of me, especially when I’m in the throes of a flare, that laments the fact that “people”just don’t get it. Would it be easier if they did? Sure. But that doesn’t mean we can’t and shouldn’t keep telling our stories.
I recently shared these words in a TED talk, “Your pain doesn’t lessen mine, and mine doesn’t minimize yours.” Though I wrote this for a general audience, I think it was meant for the spondy community. Like you, I’m a spondy warrior. Like you, I want to uncover purpose, meaning and connection in my day-to-day life. And I’m guessing, like some of you, there was a time when I wondered if this was achievable while living with ankylosing spondylitis.
Has living with AS changed my life? Absolutely. As an athlete, outdoorsman and someone passionate about fitness, it has changed what I can do and how I go about doing it. It has forced me to adapt (low impact doesn’t have to mean low intensity—look up Low Impact High Intensity Interval Training). As a father, there was a time when I worried whether I could be a good dad with AS. Not long after my daughter came into this world, I suffered from my fourth bout of spondy-related Achilles tendonitis (approximately 30% of those with ankylosing spondylitis will experience some form of enthesopathy—inflammation where the tendon attaches to the bone—and for me, it’s always my left Achilles). I have five left-footed walking boot casts. Five. Maybe one day I’ll start a rental program. So much of my pre-spondy identity was wrapped up in my physical self that I questioned whether I could be a good dad because of this disease. But I can tell you this with 100% certainty: I crush it as a dad. It might take me longer to pack my daughter’s lunch, craft her daily note, and braid her hair when I’m hurting, but I adapt, give myself more time to operate and stay in the moment.
The most frustrating thing for me living with the aches and pains of ankylosing spondylitis is the fatigue, which can make everyday tasks a real grind. And the depression I’ve fought over the years hasn’t been a walk in the park either, especially in the midst of flares, or periods of fatigue. But the depression has made me a better human. Twenty-year spondy tip number three: find a good counselor.
It’s not an easy life living with ankylosing spondylitis, but that doesn’t mean it can’t be a good one. I remember my mom sitting beside my bed along the banks of the Bitterroot River just south of Missoula, Montana, where I was attending the University of Montana, in the midst of a spondy flare. I was getting my butt kicked by spondy fatigue while dealing with a bad reaction to a medication which led me to take an incomplete that semester. I was scared, lost and hurting, when my mom spoke these simple, yet profound words that have always stuck with me. “Mike, you’re really going through it right now and I hate to see you suffering. But people who haven’t struggled bore me.” People who haven’t struggled bore me. One thing I can promise all of you out there striving, thriving and sometimes struggling with ankylosing spondylitis, is that you won’t be boring. And that’s a beautiful thing.
I never got to play my four years of college basketball. I never summited the Grand (Teton), walked the length of the Wind Rivers, paddled the length of the Yellowstone, or mountain biked the spine of the continent (Continental Divide Trail). I still hold out hope that some of these dreams will become a reality, but I’m ok if they don’t. My counselor has taught me a lot about acceptance. In his words, “Acceptance is allowing reality to be as it is, without requiring it to be different.” You don’t have to like it—you can down right hate it—but there is power in acceptance, which is far different than resigning ourselves to a life of pain and suffering. I may not have scaled all the peaks, run all the rivers, or competed in all the races I dreamed of, but I have written three books, founded a youth-based environmental nonprofit, rangered in Yellowstone for nearly a decade, worked as a fly fishing and wildlife guide in our world’s first national park, and I’ve shared my story as a public speaker. Most importantly, I’ve found my highest calling—being a dad.
Does AS rob us at times? It sure as heck does. But AS also forces us to live intentionally, thoughtfully and compassionately. AS forces us to be courageous, to live with character, integrity and humility. There are pluses and minuses to everything in life. AS is no different. I believe where we put our focus is what matters most.
I will never minimize the pain, fatigue, depression, loss of identity and hardship that can accompany living with ankylosing spondylitis. I’ll never pretend any part of living with AS has been easy. But I will say that I’m proud to be a spondy warrior.
Would I wish AS on a friend or family member? Of course not. Well, maybe for a week or two, just so they can see what it’s like (winky face).
My greatest fear, as someone who represents the third generation of people in my family to be diagnosed with ankylosing spondylitis, is that this disease could one day be passed on to my daughter. We can’t control the genetic lottery, but we can embody what it looks like to be resilient, to have a hopeful outlook, and to keep on moving in the face of hardship; and that’s exactly what I believe people with ankylosing spondylitis prove each and every day—that we can keep moving.
I hope my daughter never has to experience spondy, but I’m comforted knowing that a good life can be lived after an AS diagnosis. While I believe we are not defined by our circumstances, our circumstances certainly matter. Ankylosing spondylitis isn’t an easy path. AS may steal our energy, productivity and sleep at times, but it can’t rob us of hope. Regardless of genetic markers, my hope is that we spondy warriors will inspire others (living with and without AS) to dig deep, dream big, and believe in our ability to rise above the hard and shed light on the good. I’m convinced that each of us can uncover meaning, purpose and connection in our day-to-day lives, despite the state of our spine, the shape of our hips, and the depth of our pain.
Twenty-year spondy tip number four: We only get one shot at writing our life story. So make it count and tell it well.
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