My psychologist refers to it as “the moment you realise the world is not a safe place.” I prefer to see it as a realisation that you have no control over your life – that your carefully laid plains mean nothing, anything can happen to anyone at any given time, and there’s nothing you can do about it. For me, this realisation occurred when I first fell ill 7 years ago, and continues to occur again and again as this illness unravels everything I thought I knew about life.
Despite having grown up in a family where the vagaries of chronic illness were made clear, I once held some small belief that I could protect myself from the whims of fate. Don’t choose me, I thought, as I pumped weights, meditated, and obsessed over the organic status of my food. “Healthy living” was a totem I could hold up against the random lottery of life.
Being struck with an illness which gradually consumed everything with which I defined myself was an awakening. Chronic illness was no longer a thing that happened to other people, it was my life – as was losing study, work, volunteer work, friends and hobbies. (Not to mention much of my bodily function.)
Don’t get me wrong – I never thought that illness, poverty, or other forms of loss and hardship were ever the fault of their victims, and I spent a lot of time and money trying to redress the fact that others had been dealt a shittier hand at life than me. But to realise something through first hand experience is something else entirely, something that shattered my world and its fragile beliefs.
The actor-observer effect describes the assumptions we make about our actions: we are more likely to assume that others’ behaviour is entirely due to their personality, and attribute our behaviour to external factors.It is one of a variety of cognitive biases we use to draw this conclusion: unlike everyone else, our successes are a result of our hard work, and failures down to unavoidable circumstances. How simple and reassuring it is to believe that we have control over our lives, and in some way can prevent unspecified bad things happening to us.
Many I have met in the chronic illness community possess a quiet dignity and strength of character I can only admire. Despite being faced with circumstances which are entirely out of their control, they meet those challenges head on with tenacity and courage.
It is but a small leap of logic to attribute recovery outcomes to this same strength of character. I can too easily assume that my current health status – mostly upright, talking, able to leave the house occasionally – is due to my hard work, and forget that I was working just as hard, if not more so, when I was house- and bed-bound.
Even after all these years, I still have to remind myself that I have no say in what happens to my body. I despair that I will ever fully know not to take too much credit for my work in something that is entirely out of my control. We humans are, after all, inclined to think in heuristics. But it is important to keep reminding myself – for if we assume that those who recover from or survive their illness do so because of their hard work, what does it say about those who do not?
To desperately cling to a sense of control and order in the universe may provide some feeling of order, but it can be at the expense of one’s empathy for others. If someone has the combination of privilege, inexperience and performed the mental gymnastics required to believe that all of life’s troubles are preventable, they must also believe that those experiencing hardship are personally at fault and undeserving of help.
All Centrelink recipients are dole bludgers, assumes the entrepreneurial property investor whose collateral comes courtesy of the bank of mum and dad. Refugees don’t deserve to come to our country, bleats the white nationalist who was to be lucky enough to be born in a land not torn apart by war. I wonder what would happen if their worlds were to come undone, and they too found themselves in the three-hour queue at Centrelink, or facing decades in a refugee camp.
It is no coincidence that the only friends who have stuck by me through my illness are those who have experienced hardships of their own. Those who are ensconced in a bed of privilege have slunk away, as though I might contaminate them with my suffering.
Clinging to an illusory sense of control gave me a feeling of safety in an uncertain world. But it made me insular, obnoxious and oblivious to the suffering of others. As much as I hate living with chronic illness, it did deliver the terrifying and freeing realisation of how little control we have over our lives, which is a truly precious gift.