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.
Lived experience valued.
I’ve seen dermatologists all my life. They connect me with other specialists, such as ear nose and throat doctors and ophthalmologists, who are all in the same hospital. They also talk to me about the social challenges of living with a facial difference.
They have also come to trust me for advice about my own treatment.
I advise them against intravenous antibiotics because the wound site often becomes infected too.
They also ask me to spend time with new parents of children newly with the condition, which is a huge privilege. It’s lovely to see the kids grow up, healthy, happy and confident.