"With life, it’s a race, some people complete the race a lot faster than others, but those who do that don’t win..."

This story is about a young girl, Imogen who writes every now and again about dealing with the fact that she has an incurable skin condition. She also talks about her inspiration and advises herself and the reader about what it's like to have a disease and how to deal with it.


1. There is no sin punished more implacably by nature than the sin of resistance to change – Anne Morrow Lindbergh

IMAG0105 – 27/09/2011

Dear reader,

The 105th picture on my HTC Wildfire S was of what I had on my chin. I probably had taken more before that but deleted them. I noted: approximately 1 centimetre wide, 1.5 centimetres long. Interesting. It wasn’t an ordinary shape. An abnormality, I’d seen it before but didn’t think it was the same thing and certainly didn’t want it to be. About 8 months after returning from a 3 week holiday in Jamaica, this happens. I, Imogen, am an ordinary teenage girl, going about my daily life, following the rules as part of society which I despise.       I find nothing exciting being 14, in fact I don’t even want to be 14; childhood is amazing. I don’t look forward to getting older as I fear my future, stepping out into the world on my own, where support is decreased and practically no one cares about you because “you can do things on your own now that you’re old enough”. Despite that I find myself to be as independent as I can be, I try not to rely on other people as I have learnt that relying on other people doesn’t get you very far. I don’t share secrets as I know that if I told someone I could “trust”, they would hold me prisoner if I decided to care. I learnt that from Lao Tzu. Therefore, I am a quiet person; all I have is my education and a small circle of friends that is satisfactory. I rarely spend time with them outside school and if I need to go out I would go on my own just to avoid the commotion of having to make plans and stick to them, having to endure in lengthy conversations about school, society and people to entertain one another and at the end take pictures to put in the best friends memorabilia that usually fades away after a while. I don’t know what I would do without them though. I consider myself to be very unsociable, not only am I quiet but I don’t enjoy partaking in activities with other people, especially people I didn’t know or people outside the circle of 4 friends. To be honest I don’t really have anything to say for myself, conversations with other people never really last but I don’t mind at all. An ‘awkward moment’ to me is fine: I obviously understand that there is just nothing more to say after a while, and it’s better to say nothing than something completely out of the blue and irrelevant to life at that moment in time, so the silence is soothing.             It may seem like I’m a very boring person and I am but everyone has something in them that makes them stand out but not all in the same way. A lot of people think they don’t have a talent or something that makes them special but I believe that God gave everyone a gift; you just have to try new things in order to find them. At the moment I think that what makes me stand out is the thing on my chin because it certainly stands out on me. No one else around me has it but it doesn’t make special, what it makes me feel like is a science experiment; the way people look and pry. I know that as this thing develops on my face I will have to work harder in making myself stand out in the future because it’s highly possible that no one will look past my blatant physical defects. In order to do this I have learnt that I should take every opportunity that is open to me and I have found that I am good a lot of things but a lot of people are. I just need to find out what makes me special despite having a frustrating disease.

What they see physically is only half of me, or a quarter if that. None of the passers-by or my peers understands the psychological problems brought along with the condition that I have.  Here, if you read, you will read me and see the whole of me.                                                                                                                   I’ve always wondered what caused me to have an incurable disease. Nothing like cancer, it’s not life threatening but it gradually damages you psychologically as it gradually appears on you. It’s surprising by the amount of technology that has been introduced year on year that they are unable to make medicines and cures just like that but as always it takes time and money. Money we never have and never will according to the ‘World Bank’. The condition - or disease if you wish - creeps up on 1% of the world’s exponentially growing population including me. I have automatically become a statistic. I mean we are all part of some kind of statistic already but some people are part of more for the wrong reasons. I and the rest of that 1% being smothered by it are bemused by the creep. The creep with the plosive name and its plosive way of catching me off guard and appearing almost like magic but magic is a foul way to explain the way it appears. For some who get it worse than others, it completely turns them inside out, slowly peeling off the colour of the main organ that protects you from things like air transmitted diseases and is a huge part of your identity. It exposes them. It’s almost like you are one of the chosen but not for a good reason causing them to question what, why, when and the most annoying, how. That’s when the psychological damage begins. As always for diseases that cannot be cured, there are a number of theories as to why it happens but they are ideas that haven’t yet been tried and tested – hence the word ‘theory’ not answers, a number of them can persuade you into thinking that they are the real reason why it happens and that we should buy their products to fix this problem in our bodies thinking it will work. We waste money on things that don’t help; they consume you more than you consume them, just like the condition.                                                                 For me, as a young girl I wasn’t worried at first, I consider myself to be carefree so that stress doesn’t burn me but it started to burn by the appearance of the condition. The day you find a new patch is a stressful day, my heart feels heavy and I start to think the worse and inevitably stress out. I can say that I am mildly psychologically damaged by the condition; I believe I’ve changed since it’s appeared.

There are memories I haven’t forgotten, like a small discussion with my friends about Michael Jackson’s skin colour and how it changed so drastically, my mum said to me a long time ago that I’m always picking my lip that it’s gone so pink. Only your lips shouldn’t necessarily lose colour in that way so I dismissed that idea. I first noticed it after I came back from a holiday in Jamaica. They say that a lot of exposure to the sun is a cause, but wouldn’t it not stop after coming back to England where the Sun is almost always absent? Question one. So I find out something new about the disease: it’s unstoppable. A patch appeared just underneath my left ear, it got lighter and bigger and I began to wonder whether I had a cut there or something of the sort. Being a dark skinned person it is easy to find these things. I never worried about it until the same thing happened nearer the left side of my chin. This is where I started to get worried and furiously searched the net for answers, it wasn’t hard to find as it is quite common but as I knew I had spoken about it with my friends, I tried to deny that it was this condition that I have – the net is not exactly reliable but you can hardly fault the NHS. The images I saw haunted me, making me think that I could look like that in the future, losing my skin colour in that horrible way. I even noticed that it may have started inside my mouth and spread onto my lip which is the reason why my mum made that suggestion. As you may have noticed, the disease turns a piece of your life into a mystery – questions, reasons, causes, and not many answers. I even started to think that I was cursed, considering I spoke about the disease on Michael Jackson beforehand. My mum noticed it just as soon as I had and we went to the doctors to find out exactly what it is and any treatments for someone of my age (14). It wasn’t an obstacle figuring out what it was, the ‘symptoms’ were clear although there are no symptoms – no coughing, fever, aches and pains just the disease itself. Calm but dangerously harmless.  It was plain to see that I had Vitiligo.               

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