Saturday, December 14, 2019
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The Game of Ankylosing Spondylitis

I like to compare my Ankylosing Spondylitis (AS) diagnosis to your average, everyday board game. I have been to more doctors in my 33 years of existence than most people will ever see in their whole life. As I meet more people with not only AS, but other chronic illnesses, I realize many are, or have been playing right along with me. When you open a game you have never played before, the first thing you do is grab the directions to understand the rules and what the particular game is all about. When it comes to AS and many other illnesses you open that box and find they forgot to include the instructions. For those of you who do not know what “our game” is, let me try to explain. You discover a manual, but you quickly find that this game is going to be a rough one.

STEP 1: Pains in (fill in the blank with whatever you are experiencing) with no reason as to why they suddenly occurred

STEP 2: You go to “X” number of doctors and eventually get told you may be crazy because your symptoms are not visible and have no explanation

STEP 3: Doubt sets in, maybe they’re right…you might be a little off your rocker. You feel you have to “prove” you’re sick so you show up to each doctor with lists of research you did of what it could be and get sent away looking like a hypochondriac. At this point you are down to your last few game pieces and are exhausted. You’re ready to flip the game board across the table and quit.

STEP 4: This may be the most important step. You decide to ignore everyone else and begin to trust your own instincts. You become your biggest advocate. You are ready to win. Aggressive play is your only option now.

STEP 5: You meet the “miracle” doctor. He/She finds out what has been troubling you for years. YOU ARE DIAGNOSED! You are relieved and scared all in one due to not knowing what is ahead in your battle, but realize in the end that your winning attitude brought you a remarkable, come from behind, victory!

Some people may wonder why I see being diagnosed with an incurable disease as a victory. Well, my answer is quite simple. I hope they never have to join my game. If they experienced years of pain, doubt and frustration they would understand. I have realized that being diagnosed with Ankylosing Spondylitis was truly a victory in so many ways. I do not, and will not, have to try to “prove” my illness. I will continue my battle with a positive, winning attitude. My fight may never end, but I will definitely keep rolling the dice in hope that one day my game will be permanently victorious!

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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3 comments

  1. Very well said, Amanda. I so agree with step 5. I was diagnosed with AS 4 years ago at the age of 43. I too was scared and relieved at the same time to find out what I had been struggling with for years. Continue to fight the battle with your winning attitude!!

  2. You just described the last 10 years of my life. Thank you.
    i have only just found this resource; I was always taught that there were people that were worse of than me, not to compain and listen to the doctors cause they know best. I have had pain since my early teen years and chronic pain the last 3, I have lost count in the doctors i saw but they all made me feel like I was making it up, just all in my head. It is somewhat comforting know that my struggle is shared. I do not know much about my condition yet (not long known about the condition) but education and other peoples stories seems to my most powerful tool from not hiding away under the covers of my bed.

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