It is interesting that jealousy arises
in those who should have the most empathy.
I was recently featured in New
Idea – a double page spread. Of course I was hesitant. My story
in the mainstream media's hands. My story about living with a rare,
highly visible and often confronting chronic illness called
ichthyosis.
A story that could be manipulated and sensationalised like a great
chunk of pity-putty. But it wasn't. I didn't write the article, but
my personality, humour and honesty shone through.
The New Idea article was a small window
into my experiences. To make those who don't know me think
differently about physical appearance. To make people see my
achievements, despite. The writing on my blog is the reality of my
life. The fun I have shopping and seeing bands, the food I cook, the
clothes I wear. Sometimes the reality I write about is tough.
Hospital. Harassment. Love. Self doubt. Overachievement. My
appearance. But it's the reality that I am prepared to share. And I
am glad I do.
In the 19 months I've been blogging I
have found a new support network. Online to offline. The friendships
I've formed have been amazing. I have found support, acceptance and
encouragement in strangers across the world. I have also been told
I've helped people with ichthyosis and other disabilities and chronic
illnesses. I've been told by parents of children with ichthyosis that
they hope their children grow up to have the same positive outlook as
I do. This is a privilege. And I've never sought pity in any of my
writing pursuits.
Interestingly, the only negative
comments I have received about my New Idea article, and also my
writing for the ABC and DiVine have been from another person with
ichthyosis. This criticism has been in the form of public online
beratings. Despite our obvious similarity we are poles apart. Our
generation, upbringing, support networks, outlook and choice are
poles apart. The responses I have received from her are because of
their own insecurities and bitterness. The jealousy and nastiness
within are far more painful than her ichthyosis. Empathy versus
jealousy. I know what I'd choose.
I have chosen a good life for myself. I
could have sat at home hidden away, covering up, being ashamed. It's
been suggested that I do. But I've worked hard at my own integration.
I've had the support and encouragement from my parents. I've shown
everyone I've encountered that I CAN. The road hasn't been smooth.
I've experienced judgement, loneliness, fear, heartbreak, the desire
not to have ichthyosis, bullying and physical pain. But I've just
gotten on with life, despite the bullshit. Nothing has been handed to
me, nothing has just fallen into place. I've worked damn hard to
prove that I am not just a red face.
We all have the same opportunities in
life. We can choose not to take them. We can choose to be angry at
the blows life has dealt us. We can choose to feel hard done by.
I've chosen to see humour in awful
situations. I've chosen to grab opportunities firmly with both hands
and run with them excitedly, in awe of the possibilities. I have
chosen an education, a corporate career and a media journey (writing
and television) - an income for my independence. Friendships haven't
always been easy, but I've worked hard at them too. I have chosen
happiness. And these choices make my ichthyosis-riddled life a
whole heap easier.
(Originally written for Edenland)