Alexa Wright

1.

My skin is smooth. That is one of the good things about Vitiligo: the texture of your skin doesn't change, it is just the colour that is altered. I have got lovely skin: it feels great. I think I understand now why I have Vitiligo. It developed when I was about twelve. I think I inherited the tendency and the trigger was damaging my knees; where you damage the skin you can start a patch of Vitiligo. It can also be caused by stress, bereavement or by chemicals. When I was younger I used to ask 'why me?' because nobody else in my family had it, although I think over the years the effect on me has changed. To begin with I didn't have a problem, then I was very upset during my teens and consequently was a bit withdrawn. I still had this ebullient personality, so I still had a lot of friends, but I never had any boyfriends to speak of. I felt that I would never meet anyone, and that nobody would find me attractive, and that I would never marry. Then I came to England, and because I was thin and it was the age of Twiggy and the Shrimp, I was found to be attractive. I was able to disguise the small amounts of Vitiligo on my face, which I found very disturbing in Jamaica where I was born and brought up. I was in denial and I pretended there was nothing wrong with me, so for years it wasn't a problem. Then I met someone and I married him and when I told him about my Vitiligo he didn't seem to mind. We had a good, stable relationship. After my second child was born the Vitiligo began to spread, and so there was another time of anxiety, lack of self esteem and of feeling very unattractive. The worst time came during the menopause when a lot of other things were going on in my life, and my body was changing generally. I felt completely unattractive and was convinced my husband was going to leave me. He couldn't believe that I thought this, but nothing would convince me, and so I started to have counselling. Although I had attributed everything to Vitiligo the counselling helped me to realise that the depression was about other things that were going on in my life, to realise my intrinsic self worth, and also to begin to come to terms with the possibility that the condition may spread over my whole body. I just dealt with that one day at a time thinking 'OK, I can cope with this', and didn't try to imagine a whole white body, which was too devastating...

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You are not born with Vitiligo, so you grieve for what you have lost. You have lost your skin colour, and your sense of identity. To begin with Vitiligo was something outside of 'me': I used to have a vision of myself as somebody who was all one colour. It had come from the sky and changed me as a person, but as I had it for so long it became more and more part of me. It is part of me now and when it goes, if this treatment is successful, I am going to have another period of readjustment. You can't have something for over forty years and it not be part of you. I am what I am, and Vitiligo is part of what I am now. The other problem with Vitiligo is that it is not static. For a long time it was getting worse and I was constantly having to readjust to a changing image of myself. That is quite hard. If you have a disability or a disfigurement which doesn't change perhaps you can learn to adapt more easily. The treatment that is available on the NHS isn’t guaranteed to last. I am now trying an experimental treatment which has been quite successful so far. It is not yet available to everyone, but I hope this may be an effective treatment for some people with Vitiligo. If and when it does get rid of all my spots I don't know whether it will be permanent, but you can't worry about that. You just have to enjoy the improvement. This treatment means that I am beginning to feel more attractive than I did before. 

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2.

My skin hurts, it is tough: it is not elastic. Movement is very difficult. It is uncomfortable and itchy. When it is hot my skin cannot sweat as normal, so in the summer it is very uncomfortable in the sun. It seems like you are covered in rubber, especially at night in bed. You have to keep moving because your skin gets hot and uncomfortable and itchy, so you cannot sleep peacefully. You have to move to expose your skin to the air. I am sensitive to cold, but I need fresh air. All of the clothes I wear next to my skin have to be cotton, or I am uncomfortable...

 

People keep asking me what I am doing now I am not working, but I have so much to do to keep myself going. I have to be very careful: if I knock my skin it comes open. I have to keep putting cream on it. It is even difficult to eat sometimes because your hands can't move properly. Sometimes you are just tired, and you want to lie down. My friends get very impatient with me, which I can understand because I am slow. When you don't know people you feel that you are different, and you try to hide yourself. About eighteen months ago I had to have all my teeth taken out because the gum has shrunk and it doesn't hold the teeth properly. I couldn't eat; my teeth kept moving and it was very painful to eat. They took out all the teeth in one go, and now I have to wear false teeth. You feel people keep looking at you. You know you have totally changed, and maybe not everybody is looking at you like that, but even one person staring can really upset you. Sometimes when I get some change in my hand and try to put it in my pocket I drop it because I cannot control my hand. When I drop something on the floor it may take me ages to pick it up and I can feel people staring at me, otherwise I have to forget it and leave it there. Another thing that I cannot do the same way as other people do is greet them the way we do in Thai culture with the hands together. People can see that I don't want to do it, and I have to explain to them. I don't want to go through that all the time: what I have and why it happened... 

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When your body is so ugly you don't want other people to see it. With my husband it is all right. We are still quite close and he knows everything that happens to me. He is not an angel, but he is a kind person, and he will help me and come to see I am all right. But when my friends want to look at my skin I won't let them: I don't want to feel embarrassed. Sometimes people don't understand how uncomfortable you feel when they look at you. Before this illness I was not considered a healthy person, but I was a tough person. I didn't care about my health at all. I worked all the time. This illness has made me go deeper into my religion. Buddha says you have to let things go. Nothing belongs to you, even your own body. I used to say my skin is so good, so beautiful. Before, when I was tanned, everybody used to admire my skin, but now they say it is like wood...

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3.

My skin feels very sore, and very embarrassing. It is irritable and very itchy all the time. It is uncomfortable. For the seventeen years that I have had Psoriasis it has been bad most of the time. There were only about two years during that time when I didn't have it. They say Psoriasis is hereditary, and also caused by stress. It is mainly stress with me. I get worried and stressed very quickly and that always seems to flare it up.

 

I remember when I was about sixteen I fell over and cut my elbow. When I woke up the next morning I had a little scab on my elbow. Two days later I was just covered in Psoriasis: all over. When I broke out with it I knew what it was before I went to the doctor because a friend of mine had it. I was pretty upset because when I realised that it was Psoriasis I knew I was going to have it for a long time and I was still young.

 

I can't do the things normal people do. In the summer I am in long trousers and long sleeves. I don't go swimming, I don't go to keep fit, I don't go to exercise classes. I don't want to be seen, but also swimming would affect it and the exercise pulling on it would hurt too much. There are things I would really like to do that I can't. My little girl is nearly five and I have never been able to take her swimming. I have recently been on holiday and I had to stay out of the sun. I put my hand into the sea at one stage to get a bucket of water for my little girl and that literally just cracked my skin open. Sometimes it does and sometimes it doesn't. In a way I have got used to the Psoriasis. I haven't completely got used to the pain; sometimes it does really hurt, but I have got used to it being there.

 

People look at you in the street, I know it is only curiosity, but people do look at you differently. Going into a shop and handing over your money you find people throw it back at your hand or throw it onto the counter instead of passing it into your hand. They think that you have leprosy. I was on the tube once and two ladies were standing there and I had my hand up holding onto the rail, and one of the ladies said 'can you remove your hand please?' I looked at her and I said 'it is only Psoriasis'. She said 'I don't care, can you remove your hand'. Tears welled up in my eyes and I didn't know what to do, but luckily a man tapped me on the shoulder and asked if I would like to sit down. That kind of thing is upsetting. You can feel people looking at your hands. My daughter is not affected; they say it skips a generation so it will be her children who get it. She is fine with me having it, if anyone says 'what is this?' she is the first one to say that it is Psoriasis. She understands...

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4.

Most of the time my skin feels sore. Pachyonychia Congenita is genetic, and I was born with it. It didn't actually start to appear until I was about eight months old. When I started to crawl my toe nails began to thicken, and then when I started to walk I got the hard skin on my feet. Then my finger nails started when I was about twelve. When I was fifteen I had some on my tongue as well, but so far it hasn't gone anywhere else.

 

Pachyonychia Congenita affects my life a lot. I am not able to walk far, and if I do try to walk anywhere I usually get people staring and asking me if I have hurt my leg because I walk with a limp. I could never play sports, and I would be lost without my car. It is annoying because although there are days when I can walk a bit, most of the time I can hardly walk at all. It is very restrictive, especially when I see everyone else running around. I can't wear high heeled shoes either. I have to wear comfortable, flat shoes all the time. The disease especially affects my work at the moment...

 

Sometimes I get embarrassed and sometimes I get annoyed at people's interest, especially if it is someone I don't really know. It depends how they approach me and how well I know them. If they say 'do you mind telling me?' then I am usually OK, but if they say 'Oh god! what is wrong with you?' then it puts my back up a bit. It affects the way I see relationships in that I think I am not quite good enough: I feel that there is something wrong with me, but that is something I have just had to get used to. My current partner is great. Before, when I went out with a boy I used to wait for months before letting him see my feet, but my fiancé is not bothered at all. 

 

I have had treatment over the years, but nothing has really worked. It felt a bit hit & miss because they don't really know much about this condition and how it affects me. Because it is so rare I don't think there is that much information around. They have only ever concentrated on how to get rid of the hard skin which sounds like a cure, but that only makes it more painful because the skin underneath is hypersensitive. The gene is overprotecting and building up more skin than normal. It is probably better to leave the skin where it is. They have tried countless things over the years, but I think my only real hope is genetic engineering, everything else would be temporary.