As an Aussie nurse of over 30yrs, I developed POTS, MCAS and a couple of specialists have suggested I have Hyper-mobility Spectrum Disorder, closely related to EDS, but am older. Australia has finally acknowledged POTS (Postural Orthostatic Tachycardia Syndrome) is “real”.
As an educated athletic nurse, I have deteriorated after picking up Covid at work in 2020 to the point where I can barely get out of bed due to a racing heart rate and subsequent fatigue. Medicine has given me so many psychological labels that no doctor actually takes me seriously anymore.
I am glad that this info is being made public, but would also say it is no picnic in Australia accessing support in the public or private system, with this cluster of symptoms.
20 years ago if you had a stroke, there was a high chance of needing permanent care or dying. Medicine has made leaps and bounds to the point where if treated quickly, people get to walk out of hospital and gain most of their function back to live a regular life.
The arrogance of medicine astounds me, from the perspective of an experienced nurse, and being traumatised in the medical system for six years now. The human body is incredibly complex and doctors are quick to dismiss conditions because Research hasn’t been conducted. Yet not willing to conduct the Research or take an interest and push for medical Research funding.
Those of us with Post viral illness are disappearing. There’s a Nursing shortage, when in 2019 it was difficult to get permanent work. When conditions are not diagnosed, statistics are not kept, people just disappear.
Thank you for bringing attention to a group of conditions that often coexist. Being disbelieved has been one of the most traumatic experiences I’ve ever had. I won’t go near a hospital, because medicine just keeps adding rubbish in my file that makes it even less likely that I will be believed.
At this stage, I can barely keep food down, and I’m being assessed for a wheelchair next week. I used to be able to ride 65 km on my pushbike for fun….
