Location: Melbourne, Australia
Diagnosed with Ankylosing Spondylitis at age 22
How has your condition impacted you? A year ago I would have given a very different answer: I was at the height of my pain levels and had been told lifelong medication was my only option, so at that time, the condition made me scared, angry and worried about what was to come. Although it’s still worrying to feel the disease progressing: it has quickly moved from inflammation in the back and knees to the jaw, hip and ribs, lately I’ve felt more positive impacts. It has made me really take control of my health and learn so much in the process. In refusing medications, I have begun to learn the huge role that diet, exercise and natural treatments play in autoimmune disease. Through trial and error, and importantly learning to listen to my body, I’ve had enormous improvements in my symptoms since making changes to my diet, eliminating gluten in particular. I’m learning to feel more confident and assertive when it comes to my own health care: learning to listen to my body first and foremost, and to be so careful of what enters it, be it food or medication.
There are so many other positive impacts that make it hard to stay angry or indulge in self-pity. I think I see the world differently: I worry less, feel excited more: there is still so much that I can do despite being unwell. So many intangibles have come to me from getting arthritis at 19—learning to be excited for and truly appreciate the ‘little’ things; and to make or find opportunities now rather than in some future; and to know what unconditional love & support feels like—makes me so conscious of how some good can come from a difficult diagnosis.
What would you like for other people to know about your condition? That the hardest aspects of it are invisible. Autoimmune diseases like AS and arthritis in general are not just about swollen joints: they are entire-body conditions. I liken the heavy fatigue on a ‘bad day’ to wearing an enormous heavy overcoat weighed down with a few bricks! And also that it is so unpredictable: symptoms can come and go in a matter of hours—sometimes it feels like three days worth of ups and downs have taken place and its only lunchtime.
What would you like to tell someone who is recently diagnosed with your condition? Let yourself feel whatever you need to feel: it’s okay to initially be sad, angry, grieving. But don’t let these feelings dictate how you deal with the disease. And try to get past denial: acceptance is so important and is something I really struggled with at first. I am so thankful for my big sister at the time I was diagnosed, for appreciating the gravity of the condition and teaching me it was something to ‘come to terms with’, when I kept trying to look the other way.
Also, use the diagnosis as a tool that you have gained: having a name means you can read as much as you can and learn about your disease. This will help you to be the best advocate for your own health. In my initial denial, I did not want to even learn how to pronounce my condition, let alone read about it. Yet this only fuelled my confusion and worry. I now feel I know enough about AS, and my own body’s ‘version’ of it (each person is so different), that I know what I need to feel the best that is possible.
Thanks so much Kate!
(And thanks to Maya for introducing us!)