Advocacy

I went surfing in Southern California with my roommates in June 2006 - While I was waiting for a wave I was suddenly overcome with very strange symptoms that changed the trajectory of my life... the life I had before I entered the water and the one that began as I dragged myself back to shore split into two completely different worlds. 

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It's nearly impossible to give a clear picture of what ME looks like. It varies from case to case, especially since ME/CFS is a chronic illness diagnosis given after only a process of elimination. There is no biomarker to test for ME/CFS, though many tests can give proof of abnormalities in multiple body systems. For me, it started with a mono-like virus that never went away that after over a year of diagnostics was given the label Post Viral Chronic Fatigue Immune Dysfunction Syndrome (PVCFIDS) with no treatment plan.  What that looks like now is that I've lived much of the last 17 years at a much slower pace, needing days to recover from any physical, mental, or emotional exertion - having missed many milestones of traditional life paths - finding a new ways to create a meaningful life within the strict boundaries and restrictions of my limited energy and sensitive neuro-immune system.

I've made some daily-manageable improvements by experimenting with nutrition, psychology, and gentle yoga but have not found full recovery. I've had brief remissions in past years, the longest being a few months, where I was not feeling ill but still could not go past my "energy envelope" without experiencing severe consequences.

I've also gone through an intense transformational internal journey, as many who experience life-changing circumstances to do. I've had to question my role in society, my personal labels of identification, how I value myself and others and find worth in relationships, and my entire purpose in life and finding meaning to go on. The prognosis and management of the illness for all patients can very much be affected by the socio-economic difficulties that come with external limitations and strained support systems, so my advocacy for patients rights and access to all levels of support is a meaningful endeavour I continue to learn from and participate in where I can.  This is why I find it extremely important to be able to be transparent and open about my own experiences, so that those with "invisible illnesses" that find themselves missing from life have a voice - so that our stories remain visible for these important conversations.

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With the ongoing Pandemic, it's clear that millions more will be joining the already "millions missing" with complex chronic illness, as post viral COVID conditions develop and we define subsets of Long COVID sufferers. I myself also have experienced additional long term symptoms due to contracting COVID in March 2020 so my advocacy continues with the hopes that less people will suffer as we evolve and develop research, diagnostic tools and possible treatment options and management support for complex chronic illness patients and their carers into the future.

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