Despite society’s expectations and assumptions about looking different, every day I am SO glad that I don’t just blend in to the crowd. I am so glad Ichthyosis forces me out of my comfort zone (involuntarily) so much so that it’s made me confident enough to share my story my own way to thousands of strangers. It’s not a burden to live with this, it’s a blessing.
On Friday morning, I appeared on ABC Radio National’s ABC Life Matters program. I spoke with journalist Natasha Mitchell, dermatologist Gayle Fisher and Aboriginal feminist blogger
Celeste Liddle. It was an absolute honour to be asked on the program – Natasha and I met at the 2010 Yooralla Media Awards where she also won an award, and have kept on touch on Twitter since. I listen to Life Matters via podcast every night as I go to sleep, and have learnt so much.
I gave some information about how Ichthyosis affects me physically and socially, as well as the idea of skin hunger, or sensory deprivation, as Gayle Fisher put it. While I wasn’t nervous talking live on air, I was conscious of articulating something so personal to a huge audience. I also spoke about not feeling the pressure to conform to society’s ideal of body image.
Celeste talked a lot about skin colour as identity, and the pride and shame related to living with a skin colour. The conversation referred to this insightful piece.I was so excited to be on the program with Celeste because I admire her writing a lot – she really provides a diverse perspective in the blogosphere.
You can listen to the Love the Skin You’re In program here or via iTunes.
I found it interesting that Gayle and talkback callers primarily discussed the idea of needing to fix skin conditions, where as Celeste and I are emphatically both comfortable in the skin we are in.
While I am not dismissing the link between skin, appearance, and psychology – I believe there is a strong link, my experiences have shown that looking different doesn’t have to equal shame or guilt. As I have written and spoken about, I am not looking for a fix, certainly not for my appearance. A reduction in pain would be good, but I don’t want to “fix” or cure my appearance. I was never broken so I don’t need to be fixed. I am comfortable with my appearance and body’s shape and size (some wisdom I believe Ichthyosis has given me). This is how I am and I can’t change it, I can only be happy and make the most of the great life I have. I hope I got this message out there on the program. I also hope listeners (and readers) realise that us patients with severe skin conditions that cause visibly different appearances are living our own kind or normal (normal is just a setting on the washing machine, hey?!), and that many of us are so comfortable with how we look, we don’t want to change to conform to society’s ideal. We are proud, and so we should be.
The feedback received has been amazing. My parents are very proud, and lots of friends and strangers have written to me on social media. Natasha Mitchell’s feedback made my day – she’s so smart and a brilliant interviewer who gets the best out of her guests. I am so proud that she values my work.
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Something else I am doing in a couple of weeks is speaking at the Healthivate bloggers conference in Sydney (2 March). I’ll be speaking on a panel about health activism.
Healthivate is a conference geared towards health and wellbeing, and I am excited that it’s covering the rise of the e-patient and patient activism.
You can buy tickets to Healthivate here.
I was involved in the #hivatechat Twitter chat last Thursday, and a question arose:
“Health always = activism?”.
I also see blogging and social media use as health activism as a way to engage with healthcare providers and other patients.
Again, I am so glad blogging, and the networks I’ve made through it – like this speaking opportunity and the relationship I’ve built with Natasha Mitchell – enables me to keep telling my story – to show that living with a chronic illness and visible difference can be a burden not a blessing.
Thank you for having me, Natasha Mitchell and Healthivate.
CARLY,
Greetings from rural Australia.
I've listened to your segment on Radio National's Life Matters program twice. The original at 9am. And the repeat at 4am.
And I congratulate you on your bright, sunshiny outlook on life.
No one leads a perfect life. Some lead more imperfect lives than others.
But life is to be lived.
It's not so much what cards we're dealt. But how we play the hand.
And you're a master at playing every hand to perfection.
It's a pleasure to follow you on Twitter and see on a daily basis how much you embrace life and everything it offers.
The icing on the cake is to hear you tell your inspiring story in your melodic, smiling voice on radio.
Best wishes and take care,
Carol
Carol Jones
Director
Interface Pty Ltd
Designers of The Fitz Like A Glove™ Ironing Board Cover
Made with love and care in rural Australia by men and women who have a disability
Ironing Diva's stories are at http://bit.ly/TheIroningDiva