It's hard to describe the pain of sore skin. It's burning, throbbing, restricting, drying and weeping simultaneously, inflamed, scraping, papery, raw. The pain chips away at my emotional armour, making me thin skinned figuratively and literally. There's days spent in bed resting at home and having salt baths and Panadol, or days spent in hospital bandaged like a mummy in salty wet compresses hooked up to a drip (I much prefer the former). I don't sound sick. And my mind still works.
And then there's the challenge of being judged for looking different. There's the stares, the pointing, jaws agape, stupid questions and hurtful comments. I keep my head held high, despite.
People asked me how I can be resilient whilst experiencing pain and ignorance. Some have told me they could not face the world if they were in my skin. I've just got to continue. This is the life I've been given and I'm going to live it to the full. It'd be tiring to let the hard times get to me. I'd be lost without a full life. I believe happiness is a choice, and with happiness there's hope. I've chosen to make the best of what may have been a difficult situation.
I've chosen a good life, and there are so many things in my life that I love. There's my family and friends, my day job, the amazing things that have happened through blogging - freelance writing and speaking - travel, seeing bands, eating great food, meeting amazing people. These things in my life aren't accidental. They've come through hard work and ambition. They've come through a choice to be happy, a choice to face the world, despite. There's a line in one of my favourite songs - Fans by Kings of Leon - Caleb sings "Those rainy days they ain't so bad when you're the king". When I hear this song I smile, knowing it's true for me. This choice to be happy has brought me opportunities, and so with for minute of pain, there's an hour of joy.
I've been thinking a lot about resilience since attending a seminar about it for my day job. I've considered its role in happiness and hope, and also health. Perhaps if I wasn't so resilient, my skin would be a lot worse.
Professor Ed Diener, a founder of positive psychology, speaks of resilience. He says
''Resilience is your ability to bounce back from bad things. All of us have bad things in our lives. Some of us have had worse things, but all of us are going to have problems … Resilience is the fact that, yes, those things bother you, and they make you sad briefly, but then you bounce back.
''How do you bounce back? You bounce back by saying these things happen to everyone and I am going to move on and I am going to deal with the problem to the extent I can. And what I can't change, I'm going to live with and reset my goals and move on in life.
''The people who are able to say that are the people who are really going to be happy... So [resilience] is really the ability to move beyond problems.''
If resilience is a measure of how quickly we bounce back, I could be an Olympic trampoline. "This is just how it is", I shrug. "I'll feel less sore soon", I tell my loved ones who are frustrated for the pain I experience. I know I will have days when I am sore. I always tell myself there is light at the end of the darkness. I've come to accept this life - and I'm very happy.
While I am very resilient, I don't hide the physical pain of Ichthyosis. I was recently very upfront about my physical pain, and my honesty really saddened a mother of a young boy with Ichthyosis. She told me her heart hurts knowing the pain that her son and others affected by Ichthyosis experience, and she wishes there was a cure for us.
I reminded her that I don't complain often, and that I so often celebrate the great things in life. I told her there's hope for her son. I am so mindful of setting the example that life can be very good with Ichthyosis, and there's hope for everyone with this condition. Some days are hard, but mostly they are wonderful. I never say I suffer from ichthyosis. I always say I am living with it. That's the choice I've made, and that's brought me happiness and hope.
This post was originally written for the Voices of 2013 blogging competition, which I am a finalist in.