Sharon's Story Journey Path Story Journey Path

“My  journey starts in my late teenage years when my physical health began to decline…”

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I became a student of life,

seeking the gift in every experience.

My health journey starts in my late teenage years when my physical health began to decline. At the time the prognosis was juvenile rheumatoid arthritis which was expected to resolve itself by the age of 25. I was 17 years old and in my second last year of high school looking forward to the perceived freedoms and autonomy of adulthood whilst navigating the delights and perils of my teenage hood. The World was my oyster and I had grand visions for this Kenyan city girl, there was nothing I could think of that I could not accomplish. Post high school, I applied to study at the Queensland University of Technology in Brisbane, Australia where I graduated with a Bachelor of Science in Microbiology.

I arrived in Australia in June 1999 and immediately progressed with my studies. Prior to this, I had deferred my enrolment twice as my father had been diagnosed with lung cancer and I couldn’t fathom being away from him at his most vulnerable time. My parents encouraged me not lose the opportunity for the intake that year and I begrudgingly agreed and proceeded with arrangements. As the preparations for my departure progressed, my father and I ailed together and there were times we were simultaneously admitted into hospital. I remember how strange yet beautiful it was to visit each other in our separate rooms after visiting hours. Unfortunately, a year after my arrival into Australia, my hero of a dad passed away. 

My heart shattered into a million pieces and so did my physical, spiritual and mental health. As I continued to deteriorate and to spend more time in hospital, I was retested and given a diagnosis of severe systemic lupus erythematosus (SLE) often referred to as ‘the invisible disability’ because the physique and appearance of one battling this condition is quite often contrary to their physiology. The situation was dire, and I wasn’t expected survive the ordeal. Multiple organs had been affected and the disease had gravely progressed to a critical stage. I was on high doses of a myriad of toxic medications that didn’t seem to make a difference except for unwelcome side effects. I was scared, isolated, grieving the loss of my father and stressed about study and my student visa being revoked because I was often too sick to attend lectures and laboratory sessions. I felt lost, alone, incredibly sad and removed and I began a downward spiral into depression.

It has been 23 years since the misdiagnosis of rheumatoid arthritis and in that time I have had a plethora of challenging experiences: a diagnosis of the dreaded SLE; navigating university with a chronic illness which meant I was absent for almost half of my degree; acculturation, racism and immigration issues; multiple surgeries, hospital stays and close calls; tumour diagnosis requiring chemotherapy treatment over a period six months; complicated and broken friendships due to mismatched expectations about my level participation in the relationships; severe anxiety and depression; unemployment due to severe illness; verbally, emotionally and financially abusive marriage – and the list goes on. In addition, the co-morbidity in my situation means that I have a full-time job attending numerous GP and specialist medical appointments (5 specialists and a GP), not to mention weekly blood tests and a cup full of medication for breakfast and dinner! Not really but pretty close.

It took me years to fully accept this new reality. Lupus and depression had become my intimate partners and I had to quickly adapt and figure out how to cohabitate with them. In this long and arduous journey with varied and extensive experiences, I became an avid student of life, seeking the gift in every experience and finding invaluable lessons hidden in the thralls of my pain and tears. I chose not to define myself by the illness and difficult experiences but rather through the eyes of that Kenyan city girl who believed there was nothing she could not accomplish. They say it takes a village, and I’m so grateful, thankful and blessed to have a nurturing and supportive ‘community’ of family and friends, including my entire medical team and all the pharmacists in Brisbane who have come to know me by name! My mother is the strongest human I know! She’s walked alongside me throughout the journey and has been incredibly instrumental in helping me navigate life challenges as well as this health and wellbeing terrain. It really is ‘our’ journey and I am incredibly blessed to have my mother by my side.

I have had an unbelievably diverse life experience thus far, wrought with immense challenges and equally astonishing victories. I am in a great place in my life as I write this piece. I burst with optimism not only for the here and now but also my future. I take ownership of my physical, emotional, mental and spiritual health. Faith and hope are my anchors that have been unfailing. Over time, these anchors have emboldened my resilience and given me the confidence that I am yet still valuable, worthy and full of purpose. I have found treasures in the rubble and chosen to live everyday with gratitude for the lessons of the past, for what I still have and for the incredibly purpose-filled future that awaits. I dream big and vividly visualise what would perhaps be classed as impossible. I’m learning to love and accept myself just the way I am and wear my ‘battle scars’ with great honour, appreciating how far I have come and the strength it has taken for me to get here. I’ve learnt to always be kind to myself though I sometimes need a reminder or three. This doesn’t mean that I don’t have days where all I want to do is curl up in a foetal position and sob deeply, I do. However, I remind myself that the experience of recovery in mental health and long-term chronic illness is non-linear. Therefore, I give myself the grace to accept these moments without judgement or negative internal dialogue. I try to manage my expectations without snuffing out the mysteries and wonders of the universe and the advancements in the treatment and healing. I have let go of the picture of how it ‘was’ supposed to be and have whole heartedly embraced my now with the grand hope of inspiring others. The World is still my oyster!

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