Hope & Motion

I believe in the importance of individual uniqueness, difference, expression and perspective. To that end I am sharing my early experiences within the health systems, that may add nuance to current conversations.

My first jarring experience was at 17 years old; needing a diagnosis for a stigmatised life-altering illness. I told the doctor what I was experiencing, and he simply did not believe me. This person, who was my lifeline in that moment, said: “stop reading symptoms off the internet” and go home – offering no validation, no help, no follow-up.

I was able to come back to my home city, convince my parents I needed to see a doctor (they too believed that I was making up symptoms), and then use my own research in order to get the help I required. By this time, my symptoms were found to be severe, and I was sent for immediate help.

The next jarring experience was after receiving help; one professional told me “you’ll be better in two weeks” – I counted the days. And when the improvements didn’t match her timeline, I felt a lot worse. After 5 years of minimally effective approaches, with side-effects as bad as the illness itself, I found someone and something that worked. The original professional denied what I had discovered to be relevant (11 years later she would agree with me).

In total as a young person; I was mis-diagnosed more than four times, paid $720 per year for generic medications not subsidised on the “PBS” (whilst paying rent on minimum wage), and spent in excess of 110 hours in sessions with professionals that were treating the symptoms, and when I brought up the cause, it was denied to be true.

I felt obligated to keep coming back. I didn’t know about other resources that would help me. I didn’t have the funds to access or try some of them – so I stayed where I was. I hadn’t learned yet how to use my voice, to advocate for my needs until I received appropriate care. Which, upon reflection, is the only way I’ve been given it.

I did meet people walking complementary paths who directed me towards different options that suited me and had that had powerful impacts on my health and life. And I did find improvements, despite originally being told it was impossible… I continue to strive for improvement.

I am adding my story now to the choir of voices expressing frustration and hesitance – especially when it comes to deferring to experts, about what is “best” “good” “right” for everyone’s health, regardless of individual differences and past experiences.

Some more nuanced voices and experiences:

– Karen Hurd on toxicology and her daughter and here

– Amy Mackenzie on her experiences, including chronic pain

– Jameela Jamil and Scarlett Curtis on invisible illness

– Katherine Ryan on Lupus

– Unique on the Crohn’s

*What is not included in this post, is my experience of mis-diagnosis of women’s health concerns, the dismissal of culturally important nuance…