Redefining My Identity With AxSpa
I’ve told my personal story with AxSpa many times over.
Following my diagnosis I decided to help create awareness by creating a blog called Living Well With AS. In it I wrote about my attempts to self-manage and alleviate my symptoms as my illness played out in real-time.
Like many blogs, I knew my readership was small and contained. It was a safe space to talk about AxSpa, knowing almost everyone bearing witness was going through their own version of the same thing.
Last week I was invited by Arthritis Australia to share my story as part of the launch of a new AxSpa website. As someone both living with and also working as a health coach for AxSpa I was nominated as a suitable spokesperson.
Once again, I was happy to be involved in promoting a resource which would be of value to our community
I was interviewed, press releases went out and a few posts appeared on social media. I thought that was the extent of it and got on with my week.
At some point the story began to gain traction in the mainstream media. The angle of gender disparity in the diagnosis of axial spondyloarthritis (and my own 12 year delay in diagnosis as a young woman) had struck a chord , and my story was appearing in the news.
Late one afternoon I was asked to present myself at a studio ready to appear live on national TV the following morning. Being interviewed about AxSpa on TV was a surreal experience and went by in a blur. In the moments afterwards I wondered how many people I knew from various corners of my life had been watching.
It seemed bizarre that some of the most private, lonely times of my life had just been aired on morning television.
I drove home feeling a sense of anxiety. The version of me now on public display was at odds with the composure I had hidden behind for so many years.
I have always been so conscious of covering up my pain
The world doesn’t make a lot of room for illness. It isn’t sexy or glamorous to be bedridden or to be unable to care for your children. The world loves stories of triumph and resilience, not surrender.
It was why I would always carefully do my hair and makeup before leaving the house, or stay home if I felt I looked too sick. It was also why I often pretended, even to those closest to me, that I was fine. In part because I didn’t want to present myself as anything less than whole, and in part because I knew that was the version of me they preferred.
I’ve never wanted to be seen as a failure, and when my body began to betray me I saw it as exactly that. I spent years feeling so responsible for the onset of this disease and it was often what drove me on through extreme protocols as I tried to reverse the damage I’d somehow done to my health. I seldom gave myself the grace to acknowledge that getting sick was not my fault. In time I’d come to see this as grossly unfair to myself and others, but it was still an underlying thought that came up.
As people I knew contacted me last week, many of them said the same thing: “I had no idea.”
Last week left me thinking a lot about how AxSpa has impacted my identity and how I’ve fought hard against illness becoming a part of who I am
I wonder how different things might have been if I’d been more honest.
I’m still processing all this for myself, along with giving thought to how I can be a better advocate. Not just for myself, but for anyone struggling with an invisible illness like this.
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