SARA'S STORY

The path to obtain my own optimal wellbeing has been a decade long battle - a battle for survival that eventually led me to realise that If I didn’t become my own advocate for my health, I wouldn’t live to see my children grow up.

In 2010, I was diagnosed with a rare life-threatening auto-immune disease called Neuro-Cardio Behçets. Less than 1% of the Australian population are diagnosed with Behçets disease - of these 95% will be diagnosed with non-life-threatening symptoms, while 5% will have life threatening involvement of vital organs. In my case, I developed both cardiac and neurological involvement. I had hit the jackpot!

Leading up to my diagnosis, I was healthy and active with a demanding full time career and home life. A typical day started at 5am to fit in an 8km run, followed by a mad rush to get three children organised and ready for school before jumping in the car to drive the 1.5-hour commute to work. I loved my job as a cardiac diagnostic imaging specialist. While most days were often non-stop with routine patients and urgent fit-ins, I found this work to be very fulfilling and rewarding and could not imagine life without it. I often worked 9 to 10 hours straight before jumping back into the car, drive the long commute home and put my mum hat back on to organise homework, dinners, lunches, uniforms… the list goes on! I am exhausted at the thought of my old routine! To be honest, I am not sure how I maintained this crazy pace and hectic lifestyle for two decades without the wheels falling off much earlier. I thought I could have it all - be a wife, a mum, have a full time career and fit in all the other activities and commitments that were all part of the picture perfect life.

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I realise now that I functioned mostly on auto-pilot, not allowing myself the time to take much notice when my body started whispering to me that something wasn’t quite right. The symptoms started vaguely at first, the first being multiple enormous ulcers in my mouth that would no sooner heal and I would have another mouth full. I blamed my habit of chewing gum in the car to try and keep me alert while I drove, however, ceasing this habit didn’t have any affect. I began to be aware of how tired I was all the time, and blamed this on the fact that I was getting old (I was only 39!). I started taking Vitamin B and going to bed a few hours earlier, but nothing would abate my complete and utter fatigue. I was chronically exhausted no matter how much sleep I got or how many things I started to delete from my to do list. My knees started throbbing at night and when I tried to get out of the car after driving to work, I struggled to straighten them after having them bent for so long. Soon my ankles, wrists and elbows joined the party and my morning run was now totally out of the question. While I had always been prone to headaches, I now had a constant headache along with what felt like a brain full of cotton wool. Trying to think through the brain fog was not dissimilar to trying to drive through a thick foggy morning, and any high level thinking became almost impossible. My memory, which had always been very good started to fail me. I struggled to remember names of friends that I had known for years, forgot what I was saying in the middle of a sentence and began to forget things that were part of my normal day to day routine.

Over the next four months the gentle whisper became a scream. I went from living a full life, to a life in which my body switched from friend to enemy, going on a rampage and attacking healthy cells in my body, my joints and some very important organs (my brain and heart). By February 14th 2010, I developed severe crushing chest pain and was admitted to hospital with inflammation of my heart – Happy Valentine’s Day! I lost 5kg in ten days and could barely walk. It took six months of testing and consults with specialists from infectious disease, immunology, cardiology and neurology, before a diagnosis was made. All the time my health continued to deteriorate. As with the standard treatment protocol for autoimmune diseases, I was prescribed high dose prednisolone in combination with many other immunosuppressive medications. Ultimately, I would start and fail every treatment option available. With each relapse I seemed to deteriorate further, until I was living a life confined to bed, too sick to care for myself, with chronic relapsing pericarditis, myocarditis, and aseptic meningitis. I was in constant pain, exhausted and existing from breath to breath.

With no cure for autoimmune disease, my treatment over the ten years since my diagnosis has been dictated and directed by the traditional conventional medical approach – to treat the symptoms rather than the root cause. However, as limited as this approach can be, it would be remiss of me not to acknowledge and transparently discuss that, as with any life-threatening condition, conventional medical treatment has been crucial to my survival. I have presented to the emergency department countless times with cardiac complications, including a heart attack and stroke where I lost the ability to talk and move my left side, and without the great skill and knowledge of the medical professionals who have been responsible for my care, along with the best medical technology has to offer, I am quite sure that I would not be here today telling my story.

However, while conventional medicine has played an important and vital role in my survival in emergency situations, along with the crucial role that access to medical therapy has enabled me to remain relatively stable in-between these relapses, I have never managed to maintain wellbeing for any length of time. Despite months of weekly high dose chemotherapy along with biologic agents and trial immunotherapies, these treatments did little more than rescue me for a limited period of time, with any remission obtained failing to last once the treatment was ceased. My autoimmune disease kept being ‘switched” back on, and I would ultimately find myself rapidly deteriorating and a medical emergency once again.

It became very evident to me that a crucial part of my healing equation was missing.

And so I began my quest to find out what I (and my medical team) may have overlooked - what the missing link was between living a life of chronic illness and pain to being able to live a life of health and renewed wellbeing.

I turned to the scientific research and discovered the new and emerging field of Mind Body medicine. What I discovered was compelling, and while I value the skill and talent of the medical specialists who have been an integral part of my survival this far, not one of them discussed this information with me or presented Mind Body Medicine as a possible option to be included as part of my treatment.

The current conventional medical system is outstanding at treating acute and/or traumatic medical emergencies. If you are having a heart attack or been in a car accident, the best place for you to be without a doubt is in a critical care ward in hospital. If, however, you have a chronic illness or are diagnosed with a lifestyle-related condition, the healing equation requires a more integrative and holistic approach to work in conjunction with all that modern medicine has to offer.

After years of deteriorating health, pain and suffering, I finally found hope.

I dedicated every moment, every ounce of energy, to researching all that I could find on the principles, practices and techniques of Mind Body Medicine and delved into the research being conducted at esteemed medical institutions around the world, including Harvard, John Hopkins and the University of California.

I wrote my own healing prescription - one which incorporated the principles and techniques of Mind Body Medicine along with my own healing beliefs and concepts. I became the guinea pig in my own medical research program, dedicating myself to daily healing meditations. Medicinal Meditation, as I now call it, became non-negotiable for me and I considered it to be just like having to take a pill every morning.

My healing prescription continued to evolve as I immersed myself more deeply into the research and science of Mind Body Medicine. In 2019, I gained formal certification in meditation at the McLean Meditation Institute, as well as attended training at the Benson-Henry Institute for Mind Body Medicine at Harvard University.

Meditation and mindfulness-based practices have become a way of life, and I have not had any medical treatment, medical therapy, intervention, hospitalisation, relapse or medical emergency for over two years. This may not seem remarkable, however for the five years previously, I was unable to stay stable for any period greater than six to twelve weeks (at the very limit) without immunotherapy or chemotherapy infusions or ending up in hospital with cardiac or neurological (usually both) complications.

I found the missing part of my healing equation – one I know, that when taken daily like I would do for any other “prescribed drug”, affects me at a cellular level, changing my gene expression and effectively keeping the autoimmune “switch” off.  I have finally obtained my own optimal health and wellbeing, and in doing so, have regained my ability to LIVE my life fully.

Through my own experience, I know first-hand the struggle of trying to navigate life after a diagnosis with an autoimmune disease, and like all chronic illnesses, the road can get a little bumpy at times. Mine had huge potholes that I often found myself at the bottom of wondering if there was anyone out there in the world who understood and could give me a hand back up. It can be extremely confusing and frustrating dealing with conflicting advice, and extremely overwhelming trying to find accurate information. It is at times lonely and isolating and keeping resolve and hope can be the biggest challenge of all. I had almost given up hope of finding my way back to health and wellbeing, of ever being able to live a fulfilling life again, one that was free of pain and suffering.

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My decade long battle with a life-threatening autoimmune disease, along with my own healing journey, has dramatically changed me and the course of my life. It turned my life upside down and gave me a completely different perspective of the healing equation. My mission now is to share all that I have learnt along the way and hopefully help others who may not know where else to turn.

This is my why: to become what I needed to help others attain their own healing and transformation back to wellbeing.

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