My name is Elise, I live in Australia, and I was diagnosed with AS in March of 2015 when I was 22 years old. Just over a year before this, I had moved interstate away from all of my family and friends to start studying towards a PhD in English Literature. So when I started suspecting that something was wrong, I really didn’t have a support network around me. I had made friends in my new town and at the University I was studying at, but these were people I had only known for a year or less. Over time, though, many of these people became vital to my survival – offering to come to doctor’s appointments with me, helping me to get up from my desk or walk across a room if I couldn’t manage it, or just being there when I needed to cry.
When I first went to a doctor about some of my symptoms, I didn’t think it would be anything serious. I thought I had injured myself at the gym, or was sleeping in a funny position – I thought that, like most things, it was something that could be fixed and would go away. It was roughly 6 months between my first trip to the doctor and my specialist appointment where I was diagnosed with AS. In that 6 month period, my symptoms worsened so dramatically that my specialist was visibly alarmed and the speed and veracity with which my disease was spreading throughout my body. I had (and will now always have) serious damage to both of my sacroiliac joints, as well as permanent damage to multiple joints located in fingers, toes, wrists, jaw, and spine. By the time of diagnosis, I could barely walk, couldn’t work, and my studies were going nowhere.
When I was told that this problem was not something they could get rid of, but would be a permanent condition that could continue to get worse, the thought of having to live with the pain I was in forever made me want to die. I became so depressed that I spent months in grief counselling following my diagnosis. One of the reasons I feel that this counselling was so effective was that my counsellor, as well as being great at his job, was also a paraplegic. Every week, I had someone to talk to who knew exactly what it was like to have your body change on you irreparably, to feel betrayed by your own biology, and to have to live in a body you no longer recognise. He helped me to accept my new reality because he had been there himself, although for different reasons. I will forever be grateful to him for his kindness, good humour, and everything he taught me about learning to live with a disability.
During this time I also started Biologic therapy and, though this took a few months to really start working, it has improved my life dramatically. I can now walk again (plus quite a few months of physical therapy at the start of biologic treatment), exercise, and mostly get on with day to day life in a way that appears normal to most other people. My test results for the past 6 months have not been very promising, and it appears as though my body may be starting to reject the biologic I have been on for 2 years now. The pain is steadily returning, and some of my joints are losing mobility again – it is progressing very slowly, but it is there. But I am not scared this time, because I know that I have survived all of this before. My message to any newly diagnosed AS-er would be that it is okay to be angry, full of sorrow, and to feel like a stranger in your own body. It will be frustrating, and it will be hard work. But you can get through it, and find the other side (whatever that looks like for you).
To end on a happy note, one of the friends I made when I was first getting sick is now my fiance, and I am going to re-start my PhD studies now that I feel up to it again.
May your flares be few, and your happiness be great,
Queensland, Australia

One Response to “Elise”

  1. Dear Elisle,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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