Lived experience counts: I'm not a doctor but I know how to live with my disability.

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.

And I’ve worked with my dermatologists in educating new dermatologists and medical students.

It’s really nice to have my lived experience valued. This shows that doctors don’t just rely on textbooks, but look to lived experience to learn.

I’ve recently been referred to the pain management unit. These last two years I’ve been in so much pain, and it’s good to have a plan to manage it.

On the whole, I feel in control of my treatment. I’m also lucky that my appointments are free through the public hospital system, but the cost of prescriptions can add up quickly.

The frustrations.

But there are still time when going to doctors isn’t always a positive experience.

I get frustrated when I see GPs, who don’t know much about ichthyosis and don’t cater for my latex allergy.

In the past, they’ve often assumed I don’t have sex when I’ve discussed contraception and pap smears with them.

Now I’m newly married, they tell me my reproductive clock is ticking and there’s a high chance of having a disabled baby. That risk averse talk is hard to hear as a proud disabled woman.

I don’t feel confident enough to talk about disability pride to GPs, especially when they’ve been trained to think of the medical model of disability rather than the social model.

Plus I have my geneticist to discuss family planning with.

When it goes wrong.

It can be hard advocating for myself when doctors aren’t familiar with ichthyosis.

It was brought home to me again recently when I had emergency surgery to remove my wisdom teeth. I was supposed to wait for a place in the public hospital, but I couldn’t endure the pain anymore.

My husband took me to a dentist late one night. While I told him about my skin, and he claimed to have a relative with ichthyosis as well, I don’t think he realised the impact the extraction with only a local anaesthetic would have on my skin.

I felt powerless as he stood above me, with his fingers in my mouth, telling me to stop crying.

My gums healed quickly but my body went into shock soon after and my skin flared up.

I was in hospital for a week with bad inflammation and infection, and I was in severe pain for more than a month.

I wish I could have waited to have my wisdom teeth out in hospital — with my dermatologists and the oral surgeons working as a team.

Apart from when my skin is very sore and I’m feeling miserable about that, I am always happy leaving a dermatology appointment.

I don’t see a psychologist about my skin, so I often talk to them about how it can be difficult to write about what I live with.

While they can’t give me a script for the overwhelm I sometimes feel, they can reassure me that sharing my experience is worth it — for both knowing myself and so others can feel less alone about having ichthyosis.

carlyfindlay.blogspot.com@carlyfindlay

This post originally appeared on ABC News.