Written by Taylor Louise Carlson.
My physical health has never been peachy (ever). Even in the womb, the doctors weren’t too convinced I’d be the healthiest specimen of humankind. Since being born, I have proved them correct time and again. Like many others, my parents made the decision to never investigate the cause of my not-quite-normal development. They decided it wasn’t enough of an issue, and even still, they do their best impression of an ostrich – which is to say, they like to keep their head in the sand.
In my late teens I was very sick all of the time, and I very nearly didn’t finish high school because of it. Still, my parents chose to disregard the very obvious connection between what was happening and what had happened my whole childhood. From the age of 21 to 23, I saw every specialist a health system could offer, and every single one stared at me in disbelief, begging to know why my parents ignored such a thing.
I went from having no diagnosis, to so many diagnoses. Certainly, they were comorbidities, and explained everything that was happening. You can’t deny physical evidence. Warning: sarcasm ahead. The best part about this, is that none of my conditions have a cure, or any viable treatment, or are recognised by the NDIS. Yay. In policy, the NDIS are held to strict guidelines to ensure no disability is discriminated against, and yet, in practice, this just isn’t the case. I find myself among the many who, despite having a debilitating, permanent illness, cannot access funding or treatment. No treatment usually means instability, and for so many of us (myself included), we survive day-to-day, wondering what could happen next.
Though my health remains unstable due to a lack of research and treatment options, I am grateful for the knowledge of what my body is doing, but it came at a cost I wish I hadn’t paid. The part I have yet to tell you, is that the process of receiving said diagnoses, was one of the most traumatic times of my life. Having to explain yourself and your symptoms to so many people, for most to choose not to believe the evidence is difficult. As a disabled person, I mourn the loss of my physical privacy. The process of getting a diagnosis cost me so much time, money, and energy.
While I am grateful for the knowledge my diagnoses gave me, I am not unaware of the damage it caused, and I fear that my experience is not a sole one.
I see an urgent need to reform the healthcare system to better protect disabled people as they seek diagnosis and undergo relevant processes. The burden of responsibility falls to every single person in the healthcare field. Extending Medicare to include diagnosis; improving doctor and nurse education to include rare illnesses, and information about working with disabled patients; lowering cost of medication; providing care to those yet to be diagnosed by way of managing symptoms; and providing support to those unrecognised by the NDIS.
These are just few of the ways the system can be reformed to better protect the disabled community, and certainly improve the processes of diagnosis.
