Before I was diagnosed with AS, I struggled with lower back pain and thought I just had a “bad back.” I missed a few days of work here and there. When I had a couple of cases of Iritis over the years, I told my manager I had an eye infection (I honestly didn’t know what it was at the time).
I was finally diagnosed with Ankylosing Spondylitis in 2010 when I was in my late forties. By then, my back pain had become my constant companion, I had six cases of Iritis, and I was starting to experience joint pain in other areas of my body. The diagnosis was a shock. I finally had an answer. But now what? How was this disease going to impact my life, and my career?
I chose to hide my disease from my employer. This is a very personal decision for AS patients. I had a demanding, chaotic, stressful job in a competitive field. I did not want to put any attention on what could be perceived as a weakness. Plus, I was still somewhat in denial. I didn’t want to admit that I had this disease with a scary name that I couldn’t spell, let alone pronounce.
In my experience, one of the first things I needed to do to manage my AS in the workforce was to accept the fact that I had a chronic painful disease. A disease that wasn’t going away and that would probably get worse over time. That was the hardest first step. Because until I did that, I continued to plod along at work, working long hours, sitting too long, not exercising and not getting enough sleep. I was running myself into the ground.
I’m not sure of the exact moment when I accepted that I had AS. But I do remember thinking to myself over time (months, maybe even a year) that I had to start taking better care of myself. I was feeling the impact of a long work day on my body. I was physically and mentally exhausted. I knew I had to start doing things differently because what I was doing clearly was not working.
I was fortunate that I worked in a large company that offered ergonomic support to its employees. I did the typical recommendations for making my work environment more comfortable – proper chair, desk, mouse, keyboard, etc. My job required hours of sitting in meetings or on conference calls, as well as keyboarding for most of the day. I knew I needed to take more breaks and to get more movement throughout the day. If only I could find the time.
My pain and stiffness finally motivated me to find the time. I started taking short walks in between meetings. I walked to restrooms on another floor of the building to get up and away from my desk. I did stretches in the bathroom stall. I took walks around the building at lunch. If I was in a long meeting, I would stand up in the back of the room. These small tweaks eventually became habits.
While these changes were helpful, I still felt like I needed to do more. After much hesitation and excuse making, I finally decided to sign up for a yoga class at lunchtime. At first I thought I would never be able to take two hours out of my hectic day to do the class. But once I did it, it was not as hard as I thought it would be. It came down to time management: I scheduled the class on my calendar. I made sure I had any work assignments done or scheduled for later in the day. Once I committed to the class, it became part of my regular routine.
Getting more exercise and movement helped me better manage my disease while working. If I had a flare up, I gave myself permission to take care of myself. One of the most surprising things I realized is that I didn’t “get in trouble” if I took time out of my workday for a short walk or an exercise class or to go home early if I wasn’t feeling well. I was also fortunate that I could work at home, which was a life saver on days when I was having a flare up.
Today, my disease has progressed throughout my body. It is difficult to sit, walk, stand, or lay down for any length of time. With the pain in my hands, it is difficult to drive in commute traffic, and to use the keyboard all day. And the fatigue is overwhelming. I have finally had to admit that my disease is impacting my ability to do my full-time job. I’m trying to stay positive as I leave my full-time career behind and enter this new chapter in my life.
Balancing work and life can be a challenge for many people. It gets even tougher when you have a chronic painful disease. But the truth is, if you don’t take care of yourself, no one will do it for you.
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