ABC Open Drum had a callout earlier this year for pieces written by people living with disability. Here is mine
When illness finally forced me to stop working I felt like my life had stopped with it and I would never be a complete and useful person again. I felt I was a failure, like I hadn’t tried hard enough and had let everyone down – let myself down. I didn’t know who I was anymore or what my purpose was.
My health has never been great, I was sick on and off from a young age with chronic sinusitis, bronchitis, asthma and migraines – but the word ‘disabled’ wasn’t one that I considered when describing myself and it was never suggested. I was just sick a lot, or tired, or in pain.
There were lots of tests and things but nothing concrete was found until endometriosis in my teens and the fact that my joints were hyper mobile. With everything else the pain or sickness always went away eventually, so I pushed through.
It turns out that there’s only so far you can push on with your head down, ignoring the world, before you run into something. For me that something was Dysautonomia. The something I couldn’t ignore, the something I couldn’t push through anymore.
Dysautonomia is an invisible disability, meaning there are often no clear, visible signs of disability. Dysautonomia is an umbrella term for a group of conditions that involve dysfunction of the autonomic nervous system (the system that regulates the things you don’t have to think about like blood pressure, heart rate, digestion etc) and can involve fun things like postural blood pressure drops and fainting, which obviously isn’t so compatible with working as a nurse!
The Dysautonomia diagnosis led to other diagnoses of Common Variable Immunodeficiency and Ehlers Danlos Syndrome (a genetic, connective tissue disorder). They explained a lot about my medical history and eventual wall hitting.
This year I face letting my nursing registration go because I don’t satisfy the registration criteria for the first time since getting sick. I keep switching between being ok with this and being completely devastated. It symbolises the loss of a future I thought I had. Despite that, over the years I have increasingly found that it doesn’t define me as a person. It is a part of me and always will be but it is not all I am and all I have to offer and losing it does not equal losing myself or failing in any way.
There is a measure of grief and loss associated with chronic illness, but there is also achievement, happiness and discovery – sometimes from unexpected places. In the years since I first hit the wall of Dysautonomia I have rediscovered my love of writing, creating things and singing. I am more in touch with who I am as a person and have met some incredible people along the way. All these are things I might not have achieved in my previous life because I didn’t have the time or opportunity. I have taken up workshops and courses to keep busy and discover new things – I have financed them myself because the duration of the courses I am able to attend makes me ineligible for funding despite receiving the DSP.
Through those classes and courses I discovered a love of Millinery and blogging. Millinery is an art form and Milliners are artists. They make wearable magic; jaw-dropping sculptural masterpieces, practical but beautiful everyday pieces and delicate flights of fancy that steal your breath away. Millinery is an art for those in touch with their imagination and Australia is a fantastic place to be studying it. Plus, it and blogging are things I can do at my own pace, in my own time and sitting down!
I don’t know what the future holds for me, I have given up trying to see into it for now. What I do know is this; acknowledging that you have a disability and accepting it as part of your life does not mean giving up or giving in. Having to change your life does not mean failure. We are all so much more than what we do. Life is change, evolution is adaptation; how else do we grow to become something more and realise our potential?