Changes

"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.

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3. Doubt whom you will, but never doubt yourself - Christian Nestell Bovee

IMAG0182 & IMAG0185 – 1/11/2011

Dear reader,

The 182nd and 185th pictures were the same thing as 17 days before. Seeing as the condition liked to move fast and constantly make you aware that it was there to stay, there was no change, the patch underneath my left ear stayed the same and so did the one on my chin. However, the trail leading from my neck had slyly made its way to my chin – even closer to my mouth. It is said by the NHS:  some people only get a few small, white patches that progress no further. Other people get bigger white patches that join up. So I’m one of the unlucky 1% of the population whose Vitiligo had to develop this way.                                                                                                                                                                                               

In the first year of having the skin condition, by now I have become used to having it and seeing it develop however I am still highly conscious of it being there and feeling people’s eyes on me, especially in public places and school. Although, not a lot of my time is spent in public places unless I have to, I always avoid looking people in the eye on public transport or when walking past them because I don’t want people to think that I care that they looked at me. But in truth I do. It angers me how people could be so nosey but I know it is human nature to look at something out of the ordinary. The truth is I would probably do the same thing. Though nowadays, being in the position of having a disease that people stare at, I have learnt how it feels to have people stare at you because you’re different to others. I often wonder about the thoughts running through people’s minds as they stare at me. Are they thankful for not having it themselves? Question four. Of course they are. There is no one in the world that wants a disease. Let alone one that leaves you with questions that pile up every day of your life, eats away at a part of your body and your brain and doesn’t allow for many answers to those questions. It has no cause and arguably it has no purpose but it has hundreds of theories. No disease has a purpose which frustrates people like me. What is the purpose of cancer? Nothing, it’s the malfunction of a cell that does nothing but try to kill someone. What is the purpose of the common cold? Nothing, it makes one temporarily sick during the winter but it doesn’t kill you. What is the purpose of malaria? Nothing, it simply attacks the blood and can potentially kill you if nothing is done about it. I have come to the conclusion that the overall purpose for disease is so that people can do something about them. There is no chance of the common cold flaring up during the summer but in the winter it is very popular – it’s temporary, causing everyone that has it to do something about it like go the pharmacy or chemist for a drug that says it will help them. They help to make people a lot of money, and they provide jobs for millions of people around the world. But what about the people who have them? Question five. I think that the people who have these disease have more power than they thought, whether the disease is killing you or not. People with diseases are providing people with jobs and helping out economies around the world despite their health statistics falling. We fall and the doctors and scientists rise. They say that one thing money can’t buy is good health so that means we are spending vast amounts of money just so we are just healthy enough to survive. It is true that no one will ever be perfectly healthy. Someone always has some illness whether it is temporary or not. No one is perfect. People like me think they are perfectly healthy at first, highly convinced because they eat healthily and exercise but then things like Vitiligo creeps up on you and makes you wonder what you may have done wrong in life so far to get this disease? Question six.

I have noticed that the word ‘heal’ is in health meaning that when we are healed we are healthy. To heal ourselves we mainly use medication; medication can come in all shapes and sizes but the first medication I use is belief. For me, belief comes before anything like swallowing a tablet because I need to actually condition myself to think that I can defeat what I have and not let it consume me. I call it mental medication because I don’t just like to rely on the physical medication given to me to do all the work. I don’t like to rely on people or other things so the first thing I rely on is myself. Whether the medication I have works or not I would still blame myself because I didn’t have the courage to believe that I can fight off a supposedly incurable disease. I agree that it’s a brave thing to do, I am totally in love with people who fight cancer and other stubborn disease with such strength and even though Vitiligo is not a life-threatening condition it doesn’t mean I can’t fight it off. This is because I know that the skin condition will affect my life in the future greatly so I have to start believing from now before it’s too late. The down side is that there are some people who fight with all their might but don’t succeed however I can’t say that they didn’t try. On the other hand, there are people that don’t do anything about their disease such as refusing medication or surgery. This could be because they just don’t want to live or they just don’t have that belief in themselves that they still have the chance to live and succeed – they doubt themselves. That’s what these diseases do to you, psychologically they force people to give up on life which is why they win and it’s not fair at all. That’s why I believe in myself.

A few months after discovering the condition I have I instantly realised that even though there are medications out there that can help me, I can also help myself. I decided that it was the least, first and foremost thing I could do – I gave myself a pep talk. I stood in the mirror and looked at the blotches, it went something like this: ‘I don’t like you, I will get rid of you, you will be gone!’, so far I haven’t given up, I often repeat this so that I remind myself that I will return to who I was before; even though I am the same person. The worst thing I can do is doubt myself. If I do then I am taking the side of the condition and letting it continue to consume me in its power existing within my body. I don’t want it to be too late before the skin condition takes over my whole body and I can’t do anything about it but bathe in steroid cream which is theoretically impossible. The advantage of being smart and nerdy is that you can think fast and ahead which is why I’ve taken action on the disease I have as soon as possible. It’s wrong to say I’ve taken action early because I wouldn’t have it in the first place.

I see that a lot of people and companies have decided to lie and create a treatment for Vitiligo that is a cure. Only it’s not. They do it to make you spend your money, lure you in to buying their product with false facts and photo-shopped before and after images. I know inside that for now Vitiligo is incurable but I want to defeat that – I want it to stay away but you never know if these ‘cures’ work until you actually try them for yourself. Another problem is the cost. It’s annoying that you are at a disadvantage because you have to pay a high sum of money due to a disease that you didn’t ask for. For instance, it is £30 for 30ml of re-pigmentation gel – not including postage and packaging. It may look like companies are exploiting those who have the condition but they are just trying to make decent profit. I have to hand it to these companies – most of them are spending millions of pounds on medication that will work and if it does then they want their money back. But not only does Vitiligo affect me, it affects my mother’s pocket which isn’t entirely deep. It’s disappointing that the NHS didn’t get their first with an excellent treatment for Vitiligo like those already out there because then some people would be able to get it for free or for a smaller price and having Vitiligo wouldn’t be so pricey.

Using trial and error, I have tried various treatments outside those suggested by the NHS. The first thing I tried was an Iodine supplement from Holland & Barrett because they said that a cause of Vitiligo is a lack of iodine which the thyroid is responsible for. So I took this ‘Sea Kelp’ for a few months but eventually gave up because I couldn’t see any changes on my skin. That cancelled the theory of the lack of iodine, a few hundred more to go. However, if Iodine is the real problem then I would continue to take multivitamin tablets which anyone should do – it’s essential.

An idea was to believe the Chinese who think that their natural products like tree bark and what not can cure diseases like Vitiligo. So I went with my mum who kindly spent £35 on herbal tea that would last seven days. I was consulted by a Chinese doctor who couldn’t understand English. She asked me questions and read my palms, as if the reason for Vitiligo is written in the stars or something. Then the reception lady prepared seven paper bags containing a mixture of unknown natural things that would help to make the condition go away. That same day I went home and read the leaflet with the instructions and noticed that the small print mentioned there was a possibility of getting a rare liver condition by consuming these ingredients – Hurrah! Vitiligo and a liver condition that I don’t even know the name of - fun. Remind me to have the telephone at hand. But as I had already spent the money and it was health and safety to not return the products and request a refund, I boiled the first bag of ingredients. The smell of the boiling concoction had an unpleasant sharp smell which filled the whole house and made me not want to drink it but then I thought about the outcomes of the medicine. When it was done I poured into a cup using a sieve to remove the soggy ingredients. Let me tell you that when I took a sip the tea tasted so foul that I couldn’t even swallow it. The leaflet advised that I add honey to it if it was too bitter. Minutes after reading that I was out the door in search of some honey… The honey didn’t help, it added to the bad mixture of tastes. My eyes stung with tears as I remembered that I had to drink it for the next 6 days. To get through it I held my nose and drank in big gulps. Hopefully, it would pay off.

After all that I don’t know if it helped because to see results you have to spend another £35 for another consultation and more tea once the tea is done which I certainly didn’t want. So I didn’t go back, that was a commitment that I wasn’t willing to make at all. You’re probably thinking that if I really want to be cured of this disease I would do anything by the way I seem so determined. This may sound slightly selfish but I want to be able to take a medication that won’t rinse and tumble dry my mother’s pocket and make me want to run away from home because it tastes so bad. I know there are highly uncomfortable medications for diseases like cancer where you can lose your hair but seeing as Vitiligo is not life threatening, I would like to be treated with a medication that doesn’t make me feel like my life is  being threatened, like the Chinese herbal tea. So my journey for finding an effective treatment for my skin condition continued.

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