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A journey never planned or asked for My Life with Lupus By Shivani Pillay

The great Albert Einstein said, “In the middle of difficulty lies opportunity” No truer words could be spoken in my quest in fighting Lupus. This journey started in the confines of my study when signs and symptoms started to rear its ugly head. I was continuously reading research papers, frequenting inquiring with my colleagues and never ending blood tests. Prior to this, all #Lupus meant to me, was what I learnt in my medical text books. An autoimmune disease known as the #Great Imitator.

When the headaches, joint pain, chest cramps and extreme fatigue became too much, I found myself sitting in the room of a cardiologist. That progressed to a 24hr ECG, a cardiac MRI and ultimately the insertion of a loop recorder in my chest to continuously monitor the heart’s activity. Coming from a family that has a long history of chronic heart disease and losing my dad to this. I thought I was another statistic. However this discovery was just a pit stop on my journey I was readmitted to hospital after a DVT was found in my left arm. The medicine did not add up for the cardiologist and the vascular surgeon and this meant going back to the drawing board.

For my sore and tired body, it meant more tests. This revealed anaemia, hypothyroidism and severe deficiencies of Vitamin B12, Vitamin D, Iron and Folate. An ANA blood test was done to determine if an autoimmune disease was the likely culprit for the havoc in my body. After a 2 year struggle of unknowns, the invader finally had a name. #SystemicLupusErythematosus, a chronic, autoimmune disease in which the body’s immune system is unable to differentiate between antigens and healthy cells. Thereby mistakenly attacking healthy tissue in multiple organs of the body causing inflammation and tissue damage.

The winds of change blew through my life and I found myself tossed onto the other side of the examination table, staring down an empty path of isolation and self-stigmatization, worsened by working in a profession that prides itself on stoicism and bravado. The life I knew had changed. My days were then made up of referrals to new doctors, high-dose steroids for months on end and continuous lab work that turned up more questions than answers and diagnoses for other autoimmune conditions. It was then that I realized LUPUS is a complete physical, mental and emotional assault on my body. Of all the things that I have lost through this process, I miss my mind the most, especially on days when my brain cannot communicate with my mouth and my words come out completely wrong.

Tests indicated I have Raynaud’s syndrome, Secondary #SjogrensSyndrome and #Vascultis. There is no cure for these silent killers but lifelong treatment of immune suppressants Lupus will not be just a chapter in my life but my whole story as this journey is a permanent one. A journey never planned or asked for, but I chose to love life and hate the disease. I will fight against my body and will not become this disease. I chose to be a Lupus warrior in the fight for support and awareness of Lupus and help eradicate the societal stigma and indifference to this “invisible” illness. Having seen many of the different faces of Lupus, I am no longer reluctant to share my story but hopeful that others may learn from my experience.

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