In 2014, I was diagnosed with Narcolepsy with Cataplexy, as well as Chronic Pain from non-union back fractures. I also broke my left fibula and tibia, thanks to a micro-sleep on a staircase. The life I had been living was no longer viable, so I decided to reimagine it and focus on my health for as long as needed. My first approach was to accept my new limits and make beneficial lifestyle adjustments, which included moving home to rural Australia, where I could feel safe and supported and focus on raising my daughter. 

My second concern was using my lived experiences to inform Health and Wellbeing Advocacy research on two fronts, Narcolepsy/Sleep Disorders and School Anxiety. 

Unexpectedly, in 2020, I experienced a rare improvement in the multitude of my Narcolepsy related symptoms. I am immensely grateful for the opportunity to continue to use this opportunity to support the advocacy needs of the Australian Narcolepsy, Invisible disability and Chronic Illness communities. 

School Anxiety: 

• Part of a cross-institutional research collaboration with funding to promote further understanding of student, parent and school experiences of ‘School Can’t’
• Extending prior work in Academic Learning and Teaching via peer presentations on how to support inclusive education for tertiary students with disabilities, chronic illnesses and/or neurodiversity

Narcolepsy Advocacy:  

• Creating a social media platform for sharing emergent research summaries with the International Narcolepsy community to empower them to understand their health and more effectively engage with specialists and their care on Instagram @narcolepsy.research
• A submission to the Parliamentary Inquiry into Sleep Health Awareness in Australia that was highlighted in their 2019 report ‘Bedtime Reading’ https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/SleepHealthAwareness/Report
• I developed Narcolepsy Australia’s ‘World Narcolepsy Day’ 2022 advocacy campaign focused on changing legislation to permit access to Sodium Oxybate under the Orphan Drug Scheme for rare illnesses. 
• Consulting Producer on the Australian rural neo-noir film ‘Daydreamers’, which features a central teen character with Narcolepsy, supported by development funding from Create NSW.