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It is my belief, through experience, that the medical system in Australia is broken, specifically South Australia in this case, almost beyond repair in many regards. As a result, the most vulnerable in our community, along with their loved ones, are paying the high price with their lives.
From my own perspective as someone who has been completely failed by the medical community in South Australia for almost three decades and read countless journeys of such a similar nature to mine … Something has to change!
Both in Australia and other Western Countries.
Change that can only ever occur when silence is broken, as those of us who are broken find our voices.
On the 13th of March 2018 it will be 28 years since I had my first significant car accident, at the age of 17, during 1990.
Since that day I have experienced three more car accidents, 1995, 1996 and 2012. The most serious of the car accidents, during 1995, being a head on collision with loss of consciousness and numerous other injuries.
Added to the car accidents came chronic illness with both pain and NON-pain symptoms, which has largely gone undiagnosed with the exception of a diagnosis of Ulcerative Colitis (Inflammatory Bowel Disease – IBD) during 1996.
The first episode of ulcerative colitis responded quickly to treatment, however the disease flared again during early 1997 and this time settled in as a chronic unrelenting condition, non-responsive to treatment.
The ulcerative colitis from 1997 was poorly managed to say the least. The severity of my symptoms dismissed and down played as I bled steadily on a daily bases for the majority of a 16 year period.
On 4 occasions during that 16 year period I experienced sudden massive blood loss through my digestive system to the extent that my body would go into severe shock.
During these events excruciating chills took over my body, every fibre of every muscle shivering violently, as I writhed in pain feeling as though my entire body was tearing itself apart for a 24 to 48 hour period. Added to the pain was dysfunction through my lower back and legs, at times barely being able to walk. These 4 events and the weeks of recovery to a basic functional level….
Completely Dismissed by The Medical Community!
Curiously, during the early 2000s the ulcerative colitis could no longer be seen as active during examinations, and yet I continued to bleed on a daily bases with little to no investigation seen as being required, much less any questions from me worthy of answering.
The complexity of gastrointestinal symptoms were compounded by gynaecological symptoms I had experienced since the age of 12, along with my final 2 pregnancies of 3, throughout which I suffered from the most severe form of sickness associated with pregnancy, Hyperemesis Gravidarum.
By 2006, after a decade of fighting tooth and nail for my health I endured a Life Changing Medical Event that crippled my entire body and caused troubling episodes of some form of momentary paralysis.
Far from adequate medical treatment and recovery, the initial severity of the event was dismissed, the episodes of paralysis not believed at all and my life became one of progressive loss of function with an increase in both pain and non-pain symptoms throughout my entire body. Speech, memory and other cognitive problems also began around this time but were not recognised in amongst all the physical symptoms for several years.
An ebb and flow progression of loss of function and increase in the number of symptoms which continues to this day, all the while continuing to be dismissed, or more to the point simply not believed.
For the most part I have lived with my illness, pain and physical limitations in a private manner, with the exception of those within the inner circle of my life.
Yet, even with my closest I have held my smile firm and radiated vitality to the best of my ability. Nobody wants to know the truth of another person’s suffering, no matter how close they are, it just brings everyone down.
However, in recent years the cracks in my facade have begun to reveal the weight of what lies behind the mask I wear to hide all the pain and illness within my body for the comfort of those I interact with.
At this point though, I simply have no energy left for forced smiles anymore!
As for the dignity of keeping one’s own business private?
Well, the medical community began to strip me bare of all dignity as a young woman after the car accident at the age of 17. At which time I was accused by Work Cover of being an Attention Seeking Malingerer and A Money Hungry Compensation Fraud, as it was decided the pain I was suffering was either all in my head or I was simply the Fraudulent LIAR they chose to believe me to be.
Then as I ventured into my 20s through to my early 30s I was completely striped bare of all dignity through the implication of The Neurotic Woman. Viewed as nothing more than a woman burnt out and depressed.
The latter often coupled with the inference of a woman who is quite frankly too stupid and too lazy to educate herself to eat right and exercise. A woman “choosing” not to take care of herself in any self-respecting manner.
I have been and continue to be viewed this way despite the person I am being completely to the contrary of who I am seen to be, based solely upon my appearance alone … Negating the strong, intelligent, knowledgeable, self disciplined, well presented, so far from lazy woman that I actually am.
This view has also dismissed my past training and experience as a Care Worker with people with disabilities. Along with disregarding my studies in personal training that included course work in nutrition and rehabilitation, studies taken on after working extremely hard to bring health and wellness to my body amidst all the illness and pain.
Granted these experiences are in my past, yet I still retain much of the knowledge which I continue to implement in my own life on a daily bases.
Above all, this view has perpetually negated my Personal knowledge of MY own body!
The body that no one knows more intimately than me!
Early on in this journey, I was forced to start educating myself and researching my own symptoms. A need coming about because the institutionally trained medical “care” professionals had little time or care for a patient whose scenario was becoming more complex due to perpetual dismissal despite some degree of explainable cause and valid physical symptoms.
And yet, in educating myself in the absence of adequate medical care, as well as investigating my own medical history through obtaining my own medical records … All I appear to have done is open myself up to even greater ridicule and insult from the medical community.
Ridicule and insult purely because it is apparently not a patient’s place to take an active role in their recovery, read research material, know about their own medical history or have the faintest understanding of anything medical. Much less should a patient even think to ask questions that demonstrate a desire or the ability to understand beyond the most basic level.
Sure, I may use incorrect terminology or be clumsy in my delivery of questions in my pursuit for answers, as well as not knowing or understanding everything perfectly … But isn’t that a good reason for doctors and patients to work together and educate each other, patients educating doctors on their individual experience within their body and doctors educating patients in the complexities of illness and injury.
Ultimately my experience in seeking medical support has simply nullified my existence as a woman who has pushed through immense physical illness and injury that I believe the majority of medical professionals would falter under the strain of if they were forced to carry even a portion of the weight I, and so many others, have had to carry with so little assistance and so much dismissal.
When you have been as disrespected as I have while seeking assistance, as many patients, have been and are disrespected by those with the knowledge and means to grant assistance, the dignity of keeping one’s own business private becomes of little consequence.
Why Now? … Why So Public?
Community, as simple as that! We live in a superficial feel good world where the relatively healthy seek only what they see as positive and forward moving. A world where those of us with unrelenting medical challenges face daily hurdles that can never be fully understood by those more unhindered by daily illness or injury.
Those of us who can no longer keep up slowly fade into the background, out of sight out of mind, invisible. The world becomes a very lonely place.
Camaraderie (for lack of a better word). One of the things that has kept me going through my own journey is reading other people’s journeys, their highs and their lows. If throwing my journey out here for the whole world to see can bring validation to just one single person who is battling as I have and am, then my forthright honesty is worth every anxiety filled moment of painstakingly telling my story.
Advocacy, I never wanted to have to advocate for myself, much less any other person, in the way I feel I have been forced to. Yet, that is exactly the position I and many others have had foist upon us.
Seeking Answers, In many ways I suppose this blog is also a final last ditch effort to seek help as my body and life deteriorates. Effectively throwing my story out into the cyber-world, whimsically hoping someone, anyone, with a medical degree and just a smidge of compassion might actually take the time to really listen to my full story without issuing instant dismissal or insinuation on my mental state within a 15 minute time frame and very little thought or investigation, much less having taken into account the vast body of facts.
Each of these points and the history I have given, are of course, far more complex than the brief statements I have written in this first piece and will be expanded upon throughout this blog.
If my voice, small and insignificant as it is, can give validation to one person who is struggling … If my story can help to usher in any ounce of much needed change in our medical community … Then my fight all these years has at least counted for something more than my mere existence in a life that has completely passed me by.