I have a skin condition called bullous ichthyosiform erythroderma. I am always very sore and I take painkillers for it every day. My condition means I have blisters all the time and can’t do things like sports, such as football or rugby because I just get hurt and my skin will rip or tear.
My clothes will stick to my skin and I often have to have a soak in the bath to help them unstick without tearing my skin too badly. I appear red so everyone asks me if I have sun burn or if I have been running fast as I look hot.
On a good day my skin just looks very dry. I have to use daily ointments and creams and wear dressings to stop my skin from getting infections. I have to bathe twice a day (sometimes more) for up to an hour and a half at a time.
I first realised I looked different when I was in nursery. I got a lot of weird stares from other children and adults. I didn’t know why kids didn’t play with me, but I knew I only really had four friends then.
The first few years of primary school were hard. The other children called me names such as ‘cornflakes, scabby, snowflake and flaky’. One boy would keep picking on me, for instance, pointing out the flakes on my jumper in a nasty way. In activities like dance lessons no one would hold my hand. People used to treat me differently until I was so sad I would not go to school.
So the teachers told my class all about me and my skin condition and let them see and touch my creams. When I came back everyone knew all about me and I felt a lot better about myself. I have a lot of friends that now want to be my friend because they like me – before I just had friends that felt sorry for me. Everyone in school knows me now so they don’t stare, and if anything bad happens I care a lot less as I know I have my family and friends that respect me and stick up for me.
Outside of school can still be challenging. Once in the play area at McDonald’s a woman made me pick up the crayons from the floor rather than let me use the new ones, for fear I would be contagious to other children, which I am not.
Also at swimming I get stared at a lot as my skin is really dry. It will turn white because it is not waterproof, the redness is due to me being unable to control my body temperature very well and also being unable to sweat properly. People in our local town are very accepting as they know me or my family. But up in Glasgow and Falkirk they do stare and it’s very obvious.
I can get really sad and upset when people treat me differently and look at me as though I am a monster. I am getting better at ignoring them and trying to not let the stares and name calling get to me as much as it used to. These days I might say something like ‘good for you’ and walk away. I have a few phrases to say back to someone, or even just stare back at them too. Otherwise I just sit down and take a moment for myself, to remember that I have a visible difference and that doesn’t really matter. As I am getting older I am finding it easier to ignore the negative things.
My mum is very protective and vocal about it if someone stares or says anything. I feel happy that she is sticking up for me but sometimes I just laugh. My dad just ignores people if they act negatively, whilst my friends might say something back like “what are you looking at?”.
If I needed to talk about my condition I would firstly go to my family and if it was very bad I would come back to the Changing Faces practitioner to talk through everything.
I would say my skin has given me my personality. I am cheery and happy, I like to be out and about and in the company of others. I am not contagious and no different to anyone else.
For anyone else struggling with a visible difference I would remind them that no one is a monster, we are all just humans. If you have some friends, stick with them. If someone is unkind just remember you are the better person, and we are all fabulous in our own special way.