Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
By Spondylitis Association of America
Tuesday, January 29, 2019
I decided to write this today after trying yoga for the second time. As I looked around the room watching the other beginner “Yogis” doing the relatively easy movements and positions that I was struggling so hard to do, I noticed a significant difference between myself and others who physically looked just like me before the start of the class. Ankylosing spondylitis is commonly called “an invisible disease,” but today this disease finally became very visible to me. Today, a full eight years after having received the diagnosis, I came to the realization, and I guess acceptance, that I REALLY DO HAVE ANKYLOSING SPONDYLITIS.
I am writing this for a couple reasons. Selfishly it is therapeutic for me, but also, and most importantly, I want to tell others (patients, family members, friends, coworkers, doctors) about ankylosing spondylitis to help others get the correct diagnosis sooner. The average person with AS is undiagnosed, or misdiagnosed for 7 years, and sees an average of 5-6 doctors before receiving the correct diagnosis, which is why it is important to help raise awareness about this disease that affects so many people. Even if one person takes the time to learn a bit more about AS, then making myself vulnerable and putting this story “out there” (which I have never done before) has been well worth it.
I guess I have superficially known that I have ankylosing spondylitis since around 2010 when I was a second year Orthopaedic Surgery resident, but to be honest, I have been in complete denial about this disease. In the beginning, my symptoms were relatively mild, and I think this allowed me to remain in denial for much longer than I should have. I thought, “What is the big deal?” I knew from what I remembered learning about ankylosing spondylitis in medical school that I will have some SI joint pain and some back stiffness. I thought, “No big deal; I could easily handle this. Piece of cake . . .”
I convinced myself that this disease was like having a sports injury and I could just push through the pain. I did not tell anyone that I had the disease except for my wife. I was worried about being seen as less capable or as having a weakness in my physically demanding work as an Orthopaedic Surgeon. I also didn’t want it to affect my personal life with family and friends. I was definitely not ready to truly educate myself, my family, my friends, or coworkers about the disease, or take an active role in trying to manage it. I have been a very ‘type A’ personality my entire life - always striving for perfection, setting ambitious goals, and never admitting to weakness or limitations, always thinking I could do anything.
However, after having lived with this disease for almost eight years, I am just now starting to come out of denial. Ankylosing spondylitis has finally forced me to do more than try to ignore it. I have finally started to educate myself, family members, friends, and coworkers about this disease, and admit to my limitations and weaknesses.
I have learned painfully that AS is much more than just SI joint pain and stiffness. It is very much a systemic disease that can affect almost every organ system you can think of.
I am just starting to learn now that you CANNOT CONTROL THIS DIEASE, YOU CANNOT GET RID OF THIS DISEASE, BUT YOU CAN TAKE AN ACTIVE AND POSITIVE ROLE in how you MANAGE THE DISEASE, and still LIVE A VERY HAPPY AND PRODUCTIVE LIFE. I am finally seeing a rheumatologist regularly, taking the appropriate medications, making healthy lifestyle changes like doing yoga, taking time to stretch and doing posture exercises; I’m also eating healthier. Even with all these things, I have also come to the realization and acceptance that I will still have flare-ups and progressive limitations with this disease that I cannot control. I know I have a very long path ahead of me living with this disease for the rest of my life, but I am ready to take it on.
I came across the term “living an AS-adjusted life” from the This AS Life Live online video series and website and it really stood out and has made an impact on me. Living an AS adjusted life can mean different things to different people. To me, it means that while AS may cause you to lose the ability to do some things, you can hopefully feel that you have also gained many positive things due to having ankylosing spondylitis.
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