Though ankylosing spondylitis can definitely pose challenges when it comes to work, in the past 30+ years living with AS, I’ve managed to remain consistently productive -- mostly due to either intuition, grit, or humility.
Prior to my diagnosis, I was told by physicians that my aches, pain, and limitations were normal. As a child they were tagged as “growing pains," and as a young adult the result of “overdoing it.” I call these my intuition years. For me, that meant a lot of physical exercise, stretches, and "crashing" (with sleep) at odd times. I noticed that I was never fast or limber at the start of an activity, so endurance exercise is what I gravitated to. In high school it was cross country, long-distance swim team, and light weightlifting. In college and early in my work career, it was rugby and year-round training of running, weights, and teaching high-impact aerobics. I would stretch in bed before going to sleep, then hot showers and more stretching when I woke up in pain at 4 a.m. I’d take a nap in my car during my lunch break; I’d take sleep breaks in my office (even under my desk); and I was notorious for falling asleep on the couch at family get-togethers. I call this early period my “intuition years”: I managed the impact of AS on my career by intuitively gravitating toward helpful lifestyle choices.
After getting a diagnosis, I was pretty clear with my priorities -- I wasn’t going to let AS interfere. I call these my “grit years.” I had a fixed work ethic and career goals. Likewise, I had vison for my personal life -- an image of what it meant to be a good friend, spouse, and parent. When it came to AS, I never saw myself as a “patient,” even when hospitalized. Treatments had one purpose: to empower me to live my unadjusted life. AS never factored into my decisions at work or home. I’d work a 10-hour day and come home and play with the kids, coach their sports, and take them camping and on trips. AS would predictably grab my attention when I pushed past its limits. These are the years that I was chronically anemic, and I picked up ulcerative colitis, iritis, and intense hip and sciatica pain. If we were going to Disneyland, I’d get up early and pack everyone up so that we would be there when it opened. More than once I’d end up on a cot in the Disney first aid station on Main Street. This approach came to a head at work when I sacrificed sleep, diet, and exercise routines to take on more and more. My employer took a “grow or die” attitude. We tripled our outcome, workload, and my daily commutes. When I left, they hired three people to fill my job. The “grit” approach helped me accomplish a lot in my career, and my life would be completely different now if I had not pushed through and tried to ignore my AS during that period -- but it was the most difficult approach.
Sustainable routines are now central to my approach to employment and life. The work ethic remains hardwired, which inspires me to be dependable and dedicated. I show up and meet goals and deadlines. I also found that taking care of myself is the best way I can be of service to others, including my employer. I’m learning to pause before taking on new goals and deciding if deadlines work for me. I build in time for exercise, for joyful and destressing activities, and for proper rest.
I like the image of a bird that flies hundreds of miles. One wing represents the "work" or flapping of the wings. The other wing represents "surrender," using the air current to glide. And the body of the bird represents the "reflection," the art of knowing when to work and when to glide. I call this “managing through humility.” I no longer have ulcerative colitis or daily AS pain. When I do have flares, they are typically the predictable result of compromises made to my self-care.
What I’ve learned is that there are different overriding approaches to work. There isn’t a “best” approach. There was a path for me that served me at the time. At this point in my career, I value the science and art to finding the balance for sustainable work. I understand that a disease that will be with me for 7-9 decades requires a long-term management plan. Now that I’m halfway through, I’m less fearful of what AS brings in the future.
Photo credit: Klaus Vedfelt/DigitalVision via Getty Images
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