Before I was diagnosed with ankylosing spondylitis I heard people describing it as a life sentence. In reality I had no idea what that meant, but it went without saying that it couldn’t be good. I have lived with this label now for 3 years, but suffered for much longer. At first I was glad to have a diagnosis, an explanation for the crippling symptoms that I experienced, and still experience, every minute, of every hour, of every day. Now, I am living in the reality of that life sentence.
This cruel and chronic disease chips away at you so that, over time, it takes complete control of you; and not only your life, but also those around you. I can step out of my front door and walk down my street, and nobody knows that my neck hurts and my SI joint is screaming at me every time I turn a corner. I can post a Facebook photo, and nobody knows that at that moment my lower back is aching because my hips are 3 inches out. I can sit in a coffee shop and drink skinny lattés, and turn myself into a fictional character for a couple of hours, while all these things hurt at the same time, and nobody knows. I can escape; for 2 hours I am disease free, I can eat what I want, do whatever sports I want, I don’t take any medications or inject myself with obscenely expensive drugs… I am in control.
But then I stand up, and remember I can’t, shouldn’t have sat there for that long. I am back in the real world where it controls me. I try not to let it, but it is slowly taking away every little piece of me that it can. However, there are some things that I won’t let it get its claws into, because those things are more precious to me than anything else in the world, no matter how much it hurts. There are people who will always love me for who I am.
Writing is therapeutic, cathartic, escapism, and mine. It is something that it will NEVER take away from me.