My life with psoriasis began at the age of 4. I can clearly remember the incident which lead to the discovery and diagnosis of psoriasis. I was at my paternal grandparents house watching "Dot and the Kangaroo" on video with my cousins. The ending is quite a sad one and, like any other child of that age, I was very upset. In tears I tried to get away from my cousins (both male) who were laughing at me for being a baby and ran head first into the door handle of the lounge door (the door being opened by one of my parents). At first I just had an egg on my head and it hurt but that bump was the start of something which would come to be a major part of my life.
A couple of weeks later I couldn't stop scratching at the area I had bumped and my mum noticed that my clothes seemed to have dandruff flakes on them. She had a look at my scalp and decided to make a doctors appointment for me. My mum was well aware of psoriasis, my maternal grandmother had the condition, so she knew what she was seeing instantly.
My GP was really good. It was confirmed that I had scalp psoriasis and he gave me special shampoo and lotions to use on my scalp and hopefully keep it relatively calm. The shampoo and lotions smelled absolutely vile.. they were all coal tar based and I swear you could smell me coming way before you could see me but they helped to keep the flakiness and itching under control, for a while.
For the majority of my childhood years the psoriasis was confined mainly to my scalp. Thankfully it was hidden by my hair and only really became an issue when it was itchy or flaky. Then around age 10 things began to change. My body began to undergo the early stages of puberty and my hormones started to kick in... sadly this was the last time I ever remember having completely psoriasis free skin. The scalp psoriasis started to creep forward past my hair line, appearing on my upper forehead, behind my ears and at the nape of my neck. I could hide this by keeping my hair down and having a fringe but I couldn't quite do the same when it started to appear on my body.
By age 11 I had patches of psoriasis on my arms, stomach and back. They were fairly small patches but they were there and very noticeable, not only to me but also to the kids I went to school with. Queue the name calling and nasty comments... The most common names I was called were flake, scabby, scar, and snowflake.... As hard as my GP and I tried there just seemed to be no way to make the patches smaller, less red, less flaky or to go away... I worked my way through creams, lotions, bath and shower emollients and moisturisers but nothing seemed to have any effect. I spent every night coated in coal tar creams, my pyjamas lasting a month or two before they had to be thrown out and replaced because they had become so badly stained and coated with coal tar. I walked around in a cloud of coal tar, not only from the creams but also the shampoo and bath emollients that I had to use daily. My skin took on a brownish colour from the treatments and I looked like I was constantly filthy. Hospital treatment came next and despite being covered in coal tar, wrapped in clingfilm and many other unpleasant smelling and uncomfortable treatments absolutely nothing helped to clear up my skin.
The name calling got more common. I was treated as if I had a contagious disease by most of my classmates, even people who had been considered some of my best friends started to treat me differently. Thankfully I had a couple of very good friends who didn't change their attitudes to me and I am happy to say they are still friends to this day (thanks Vicky and Davina). I even began to notice that adults would look at me with repulsion when I wore t-shirts or tied my hair back on summer days. This is when I started to become more insular and less outgoing. I took to reading books and spending time playing alone in my garden and on the street I lived in. I would try to avoid situations where I had to mix with people I didn't know and I would try to avoid the looks of disgust and pity from those around me. One thing I couldn't avoid though was school and the nasty, spiteful comments that were made about and to me on a daily basis.
Looking back I am surprised I survived those last couple of years of primary school. I learned a very valuable lesson back then that I only acknowledged when I grew up.. The kids at school were mean to me, that is something that could not be denied, but they didn't know any better... they had no comprehension of the hurt they were causing with the name calling and the way they excluded me socially but the adults were a different matter all together. They may not have called me names but the way they acted towards me at what was a very vulnerable and important stage in my social development was disgusting. They should have known what effects their attitude would have on a young child, but then again, unless you have a disfigurement you have no idea what it feels like to be different so I suppose they can't be blamed for their inability to show compassion or to show their kids how not to behave.
These early years were instrumental in my becoming the person I am today. My love of reading stems from those times where I wanted to escape the ridicule, this is where my love of role play gaming came from because for a small period of time I could be someone, anyone else and live for a while with perfect skin and perfect looks.... These years are also the reason I became so involved in amateur theatre as a teenager, again I could be someone else and not myself.
Without the bullying and name calling I wouldn't have the interests I have, I spent time reading and learning rather than out playing with other kids and as a result I have grown up to become an intelligent woman. I concentrated on being the best I could be at everything I did so that my looks wouldn't get in the way of my career/employment and I have the bullies to thank for helping me get where I am today. Had they not treated me with the contempt that they did I would not have worked so hard to "show them" and would probably be stuck in the same dead end hole a lot of them are still in to this day.
I know there are many people out there who have just embarked on their journey with psoriasis, they are where I was at age 4 - 11, afraid to socialise, hiding their skin condition away under long sleeves and trousers, and my heart goes out to them. I know how hard it can be to be a teenager and to try and fit in while being so different from everyone else. I know how hard it is to be an adult in the workplace and trying to not have your skin condition noticed by colleagues. I also know that each individual has to make the journey to acceptance of their condition on their own but I would like to offer support from one who has accepted their lot to many others who are working on it and hope that my writing about my experiences will give hope to others who are struggling to live and survive with psoriasis.
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