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Actually, my illness does define me

  • 01 October 2020
For many people, illness has a narrative: a clear beginning, middle and end. If we’re lucky, the ending is actually a fresh start where the illness is gone and our hero is returned to normal life, changed but stronger because of their ordeals. In the lives of those with chronic illness, however, those lines are blurred; our descent into illness may have been gradual and there might be no end in sight.

About three years ago, I remember lying on my couch. I was convinced that I was dying. There was no other reason, I thought, for why I could barely bring myself to stand up and do basic tasks like shower or go the toilet.

At that stage I had been experiencing marked fatigue for well over six months and no doctor could tell me what was wrong. Despite committing myself to a fresh start by seeing a dietician for nutritional advice, deliberately losing weight, and improving other aspects of my health, the unexplained fatigue wouldn’t resolve. I briefly believed that one day soon doctors would find a tumour or pathogen, but only after it was too late to save me.

That catastrophising passed quickly, but I tell you this story to illustrate just how damn sick I felt.

Recently, I heard and bristled at what I have since learned is a common platitude in the wellness-sphere. It goes something like: ‘Your illness doesn't define you.’ Though I appreciate the sentiment — my sickness does not erase the fact that I am a complex individual — it's a platitude that downplays the impact of chronic illness on my life.

Sufferers of chronic illness (particularly invisible chronic illness) often face an uphill battle for empathy; those with factory-standard bodies don't understand why we are so fixated on what ails us. Even medical professionals struggle to interpret our vague symptoms, and many put us in the too hard basket.

'I used to subject myself to guilt and shame around my limitations. I believed I was a bad friend, a bad employee, and self-flagellated after decisions that I now realise were not truly choices. I now know that it shouldn't be up to me to change what I cannot.'

While our friends and family want to be supportive, most just don't understand the soul-crushing burden of unrelenting sickness. Clumsy attempts at providing emotional support often come out as patronising, or unintentionally minimising our struggle. Saying 'your illness