Year 8. The talk of the year would usually be assessing the attractiveness of a new student, but this year it wasn’t the case. With a locked door in the centre of the changing room muffling our gossip from the boys, we spoke openly about who else started their period in the summer and who believed in their 13- year old bone structure enough to shear their hair into a pixie cut this time.
But we were closed about other, physical things like our starchly ironed armpits stuck rigidly by our sides, lest we let out the result of that dark damp hotbox seep out.
The hushed talk of that year was my petite friend’s face sprouting cheeks like raised bread dough, whilst the rest of him remained the same: petite, birdlike.
Our smelly bodies belonged everywhere, so we couldn’t understand why his face didn’t belong to the rest of his body anymore.
I remember being at his house. He was angry at his dad a lot, which confused me because he had given him a kidney.
It’s been almost a decade since the day when he came in with cheeks puffed as a result of steroid side effects, a common medicine given to organ transplant receivers, and only now does his anger make sense to me.
After realising that being tired and feeling ‘not normal,’ was a chronic illness and not just a result of being twenty and a student, I try to waft a sense of guilt towards the specialist doctor from behind the desk like this is somehow his fault. He’s old and white and rich, and I’m the sky but I pay him to tell me the report of my own body’s weather.
Chronic illnesses are defined by their longevity and likely progressive nature if not managed. According to the Australian Bureau of Statistics, chronic illnesses account for 9 out of 10 deaths in Australia. Around 50% of men and women in Australia present with one or more chronic illnesses, spanning from progressive diseases like COPD and diabetes mellitus to autoimmune diseases, disabilities and mental illnesses.
Some chronic illnesses, like cystic fibrosis are purely inherited whilst others like mental illnesses and autoimmune diseases may be largely a result of genetics, environment and chance. What is worrying is that despite this, nowhere in government guidelines like the ‘Australian Institute of Health and Welfare’ does ‘health’ equate to anything outside of the sum of an individual’s choices . This idea of health can be helpful in progressive conditions like diabetes, where 45-49 year-olds are at higher risk, but it doesn’t necessarily relate to the 20-30% of young people with chronic illness. Diseases can also develop beyond individual control, and otherwise healthy young people likely haven’t lived long enough for allnighters to drastically affect the body’s physiological mechanisms.
Therefore, if health does stray beyond the individual’s control, it can feel like the body isn’t your own. Being told that I was ill regardless of my individual efforts to be healthy, makes me feel like I’m personally fine. But the sick person uber pooling around in my skin isn’t.
The dominant biomedical model of health focuses on the sick body’s pathology rather than other aspects of personhood. However, integrating sickness and health, rather than purely labelling people as one or the other is particularly important in people with chronic illnesses, who, by being the antithesis of health,face the heavy connotations of mortality. A change in government funded discourse where room is made for the fluctuating states of both sickness and health for chronically ill patients, can surely help mental and physical health far better than the biomedical model alone.
I don’t remember my friend being ill. Even when we skipped queues because of his disability card at theme parks. The best rollercoaster was vampire themed and painted loud purple, with kitsch gravestones scattered throughout the queue. At the end of the queue you could see segments of the roller-coaster coming in, offloading and picking a new set of people like clockwork. There was a robot playing the organ. We found him terrifying, until the tenth time we clammily went on the ride.
Coming back to University, where there is so much emphasis on the future, has made me realise that one of the only certainties in my life, and others going through similar circumstances, is the illness.
Life has always been too short. Being ill has just made me recognise it sooner. But, like the roller-coaster accented with death, there is enjoyment to be found in the strangest of places.