A Journey to Acceptance
In the early nineties, doctors diagnosed me with ankylosing spondylitis. With me being in my teens I couldn't really comprehend what kind of journey would lay ahead of me. The only thing that I could realize back then was that I was in pain, and that that pain would never ever go away.
Over time, I started to see what having AS would mean for me and what that would mean for my future. Doctors told me that I had a disease that I had to fight against. They prescribed anti-inflammatory pills and special exercises for me. The doctors couldn’t help me get rid of this pain and disease. The only option was a fight to prolong the deterioration caused by AS. I had the bad luck of having a pretty extreme case. Therefore on really bad days, I had to take up to 4000mg of ibuprofen just to cope with life.
I could have really used a community of chronically ill to connect with. Or maybe I wasn’t ready for that yet. The doctor offered to join a weekly talking group. I sure as hell wasn’t ready to sit in a circle to talk about my disease. Movie scenes of people joining an AA meeting popped up in my head. That vision wasn’t something that I was ready to let into my life.
The doctors were right, AS is a disease you need to fight. Even though they meant physically, my fight started mentally. I started running away from my disease. If I just pretend hard enough it’s not there I could live a normal life. I started skipping appointments with my physiotherapist. I didn’t want to do movement exercises, I wanted to have fun with my friends. Knowing that those exercises would bring even more pain with them made the choice to not do them easy. I just kept munching on pills and hoped this nightmare went away like that.
Wearing a mask
How could the outside world ever understand what was going on inside? How could I ever put into words what I was experiencing? It would be way easier to put up a semi-fake smile and keep pretending everything was normal. It did help me a lot that I always was a positive and happy person. But behind that smile I was still struggling with the pain, I was still fighting a battle with my own body. The famous phrase among the chronically ill, "I’m fine," was born for me. That "I’m fine" had a whole different definition for me. That mask became my identity for over twenty years. Until my thirties, I fought against my disease instead of living with it. A whole lifestyle change to incorporate AS as being a part of my life was needed.
Not alone anymore
Even though I did find a way to live and cope with AS, I guess it wasn’t until June last year that I finally took my mask off. By that time the mask had become such a part of my identity that I didn’t even realize that I was wearing one. June last year I started connecting with the community on Instagram. My intention was to inspire people with my journey to the half marathon. My aim was to help the chronically ill with my experience and to show that we all have greatness within us. However, the true gift that I got in return was that for the first time in my life I met people who knew. People who spoke the same language. Finally, I was able to take off the mask and show the world the real me.
How much about your AS do you share with others?