By Carly Findlay.
A few weeks ago, I was clearing out my spare room to make space for a home office.
I came across an envelope that contained medical photos from when I was about four years old, and a large collection of letters from dermatologists and paediatricians.
The letters weren’t hopeful — telling my parents of about possible treatments and referrals to new specialists. The doctors were never confident with my prognosis.
When I was less than one, my parents took me home from a long stint in hospital with the doctors telling them there was nothing more they could do for me. I was sent home to die.
This Thursday I will be 35, and that home office will be my space for me to write articles, speeches and possibly a memoir. I’m now communicating about living with the very thing the doctors thought I would die from.
I’ve spent a lot of my life immersed in our health care system and have witnessed first-hand how much it can affect the lives of people with disabilities. It takes a good doctor or nurse to realise that the lived experience of patients can be an integral part of our own treatment.
Hospital was better than school.
I spent a lot of time in hospital as a kid. I used to tell my parents I preferred being in hospital to being at school as I felt understood and valued there.
These days my hospital stays aren’t as frequent but I still visit outpatient clinics regularly.
It’s my rare, painful skin condition, ichthyosis, that brings me into regular contact with the health system. Ichthyosis is a chronic illness and it makes my skin itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily, generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. Infections can make me very sore.
My skin condition affects lots of other things in my body. My eyes, ears, digestive system, temperature and metabolism are all affected to a degree. I see lots of doctors!
Even though I’ve had ichthyosis since I was born, I didn’t identify as having a disability until I was in my late 20s.
It was through meeting others with disabilities that I learnt about the social model of disability (society as a disabling barrier rather than our bodies as ‘the problem’).
It was then I realised the attitudinal barriers and low expectations I face are very similar to what my friends with different disabilities face.