When I was 16, I was immersed in a world of Savage Garden, velvet shirts and mascara that made my hair limp but many shades lighter. Living with Ichthyosis was a reality – but I didn’t consider it to be such a part of my identity then – not like it is now. I also desperately wanted to fit in, but I didn’t think I could do it and embrace my skin condition. Here’s the thing. I didn’t see anyone else like me – in the street, in the media, on film, and talk of a cure came from everyone from doctors to strangers, so how could I accept myself? I wish I knew what I know now 20 years later.
Here are three things I’d tell my 16 year old self.
Connect with people like you.
The Internet has just become available at school. One day you’ll be able to carry the internet around in your pocket, but for now you’ll have to keep waiting to use it in the library instead of doing PE. One of the best things the school librarian will ever tell you is to use the Internet to find others with Ichthyosis. When you aren’t chatting on the Savage Garden BBS, you will find people like you – all the way in America. You will meet a woman called Laura who has had many similar experiences to you. She will be the first person who will make you feel like you’re looking in a mirror – even though you never see her face when you type to her. Laura will be your first role model with Ichthyosis, and you’ll continue to connect with many more.
Remember that not everyone with Ichthyosis will experience the same symptoms and level of acceptance as you, nor see the condition as a defining factor of their lives – and that’s ok.
There will be a stage in your 20s where you don’t want to connect with others with Ichthyosis, but you’ll soon see the friendships and peer support is worth the world to you. You’ll meet and help so many people with Ichthyosis, and their families too.
It’s also important to connect with others who have different diagnoses to you – from different types of Ichthyosis to different impairments. You’ll have so much in common. But don’t play the Oppression Olympics, we need solidarity, not division. There are no wins in who has it worse.
See disability in a broader way.
You didn’t identify as being disabled when you growing up in Albury Wodonga. You are never in denial of you skin condition – you can never hide it. But you just want to be like everyone else – and yearn to buy the now defunct green-based foundation that apparently reduced the redness.
It won’t be until you mid 20s that you identify with having a disability and a chronic illness. You think ‘disability’ and ‘chronic illness’ have really negative connotations – and why wouldn’t you when society makes ableist slurs, employment of people with disabilities is low and physical and attitudinal barriers are rife?
As a child, the only disabled people you knew were people with different impairments to you – they had cerebral palsy, used mobility aids and received help at school. You saw Paralympians too, but they never had a spot on prime time TV, and you were never into sport, so how could we be the same?
There is a limited view of disability in the media – limited conditions and limited expectations. Disability is often portrayed as tragedy or heroic and nothing in between.
You’ll come to subscribe to the social model of disability – which means society is more disabling than your body. While your skin condition is often painful, and will continue to keep you in bed for a few more days than you’d like, it’s the attitudes toward your appearance that are far more disabling.
When you finally identify as disabled and chronically ill, it will change your life. It will help make life easier at work, at uni and you’ll meet so many like-minded people. You’ll find role models like Laura, and also in other people – with different diagnosis. You will connect with them because you’ll share similar experiences and views about disability. You’ll continue to face discrimination, but you’ll get through it because of the solidarity from the people you’ll meet when you identify as disabled. You’ll also get to know yourself through writing about being disabled.
You will never have long hair.
It’s medically impossible. Brittle hair is a symptom of your Ichthyosis. In years eight and nine, your hair broke off severely, and looked like the undercut on that boy in year seven who treated you pretty badly. Embrace the curls. Even if you use the crunchy mousse, embrace the curls. Condition your hair more than you wash it, and use shampoos without the sulphates. Your scalp will thank you. Stop wearing your hair flat on your head – held with hair clips that break off your hair even more. And never use hair mascara or that horrible lemon juice spray to lighten your hair. Love it the way it is.
Dear 16 year old me, it’s ok to be different. You don’t realise yet how positive it can be to embrace disability and chronic illness as part of your identity, but in 20 years time, you’ll be so glad you finally did. And you’ll love your sometimes patchy curly hair too. I promise.
For more information about mental health visit this page. If you are are struggling with your mental health and need support or just someone to talk to here is a list of Support Services you can access.
Carly Findlay is an award winning writer, speaker and appearance activist. Carly has the rare, severe skin condition called Ichthyosis. She writes on disability issues for publications including ABC, Daily Life and SBS. She was named as one of Australia’s most influential women in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards. She has appeared on ABC’s You Can’t Ask That and Cyber Hate with Tara Moss, and has been a regular on various ABC radio programs. Carly is currently writing her first book – a memoir. Read her writing on appearance diversity and disability at carlyfindlay.com.au