The Story On My Skin… My blog - October 2016 – My blog
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October 2016

    Style

    Why I Destroyed the Relationship I had with my Wardrobe

    We’ve all been there! Those times when you slide open the wardrobe doors and stand back in anticipation as you ponder how the hell you’re going to clothe your body before deciding that you ‘definitely never, ever have nothing to wear’ (queue yet another shopping trip!!). My wardrobe made me feel defeated most mornings. I’d spend the first 30 minutes of my day feeling unproductive as I pulled items from their hangers, holding them up in disgust, like I couldn’t have been the one that had made the purchase a few weeks back. Fashion for me was never something I found fun or could embrace the way I wanted.

    Growing up, I had a limited sense of style, lacked any creative flair when it came to pulling an outfit together and often matched my top half to my bottom in ways that you weren’t supposed too! (I’m probably sounding a little harsh on myself now, but looking back that’s how I felt!).

    My lack of creativeness wasn’t down to lack of interest in my appearance. It was down to the insecurities I had with my skin. Having Vitiligo, especially during my teenage years, was a struggle. It prevented me from experimenting and encouraged my focus to be purely on covering up and disguising a condition I was embarrassed about. Trends. Changing seasons. A desire to be stylish, it all meant nothing unless I was wearing something that covered me from head to toe.

    What we wear communicates a powerful message to the outside world and according to Professor Karen J. Pine, of the University of Hertfordshire, “When we put on a piece of clothing we cannot help but adopt some of the characteristics associated with it, even if we are unaware of it”. In a number of studies Pine carried out, one participant admitted, “If I’m in casual clothes I relax and am tomboyish, but if I dress up for a meeting or a special occasion, it can alter the way I walk and hold myself”. Reading the outcome of such research, made me think back to my own style, the message it projected and how it made me feel on the inside….

    As a teenager, I wasn’t into your typical mixed prints, cool dungarees, the Britpop look or thigh high shorts. I loved the Spice Girls (cringe!) and their ‘barely there’ style that bode well with their outlandish personalities, but the fact I admired 90’s fashion but couldn’t embrace it, troubled me. As a little girl, my parents dressed me in shorts, t-shirts and pretty little dresses which showed off my patches. To me that was normal and I didn’t mind because as far as I was concerned, having Vitiligo was normal.

    So what happened? Why was I no longer that little girl who thought what she was ‘normal’?

    I became a teenager. A self-conscious, shy, paranoid, ‘desperate to fit in’ teenager. No longer did I want people to see what I looked like underneath the layers and so I quickly retreated within myself. I became obsessed about covering up. I developed a wardrobe full of ‘safety pieces’ in ‘safety colours’ because it allowed me to blend in. My staple pieces centered around tops with long sleeves, jeans, trousers and skirts only if they could be worn with 80 denier tights.

    I owned nothing outlandish, colourful or risqué because that would have moved me into a place of discomfort. For years, my entire wardrobe, whether it was summer or winter, consisted of long sleeves. The bravest thing I done during the summer was wear a top with ¾ length sleeves instead. Sandals, summer dresses and shorts were a ‘no go’ area.

    What I wore in my teens projected the image of a shy teenager with limited confidence and incredibly low levels of self-esteem. I was scared about being judged and so conformed to what I thought would stop people from talking about me. My clothes helped me to become the person I was.

    As I entered into my late teens, ready to embark on life as a college student, I realised I’d accumulated a wardrobe of mismatched items that had me feeling very uninspired. My clothes felt like ‘emotional baggage’ and I knew it was something that needed to change and so my ‘wardrobe overhaul’ began. Mum jumped on board (she helped with being ruthless!) and immediately we started packing up anything I hadn’t worn in 6 months and giving it to charity. I forced myself to let go of some of my safety pieces. I reduced what I owned in black and completely slimmed down my wardrobe ready to start again. The most unusual part of the exercise, wasn’t that I’d gained the confidence to change how I looked…..I hadn’t……but rather I had recognized it was something I wanted to change…..

    My shopping habits started to change. Gradually, I was able to refocus my mind by putting more thought into what I was buying, rather than impulse buying. I fell in love with maxi dresses, which kept my legs covered during the summer. Pastel colored jeans in pale yellow; lime green and baby pink made me feel summer ready, as opposed to typical denim. My caramel coloured skin came alive against citrus colours such as oranges, reds and yellows so I injected instant colour on my top half when teamed with black jeans. Before buying anything I would ask myself whether I genuinely needed it and if I had something in my wardrobe that would go with my new purchase. In order to make the changes, I had to be strict otherwise I risked adopting my past bad habits.

    Here’s how my journey towards changing my style evolved…..

    Look for Inspiration and create a mood board

    Popular magazines was what gave me inspiration and helped me define the styles and trends I was drawn to. I would cut out my favourites and stick them on a mood board which was a constant reminder of what inspired me. This gave me a sense of direction even if I had chosen things that ‘weren’t really me’.

    Don’t be afraid to experiment

    I spent years stuck in my comfort zone because I didn’t have the confidence to venture past it! When I realised I wanted to be more open, I found I was able to have a lot more fun! Start by looking at items you would normally buy, perhaps in a different colour. So rather than opting for most people’s ‘go to’ colour of black try something in bold red or shocking pink. It will help divert your attention away from ‘safe’ colours and will help you to refocus your mind on being a little more experimental.

    Focus on what looks good on you and not anyone else

    There is nothing wrong with admiring a friend’s style or the girl in the office that can throw things together and still look like she’s emerged from the catwalk! But just remember, your style is unique to you. I was so paranoid about standing out, that I ‘played down’ what I wore, however, eventually,

    I started wearing t-shirts and vests with a cardigan over the top or fitted shirts, which was a change from a standard top with long sleeves.

    There’s more to fashion than showing your skin

    At school, I was convinced that fashion meant exposing your skin which of course it doesn’t! There were so many trends I could’ve embraced whilst remaining covered, but I had no clue what suited me. One summer, my Mum suggested I try culottes, much to my distaste! Who on earth wore garments that hung like skirts but were in fact trousers was my initial thought. But I gave it a go. A pleated black pair that I teamed with a simple white tunic….which worked because it accentuated my slim frame. I realised that fashion wasn’t about revealing myself. It was about wearing what made me feel comfortable and what made me and my shape look amazing.

    I’m by no means verging towards being the next Alexa Chung! But what I do know, is that I’ve found a place of comfort when it comes to dressing with confidence. I wear things that I like, I show my skin and I don’t consider whether anyone passing me in the street likes what I wear. I have fun experimenting with trends and putting things together that gives me a little uniqueness. I dress for me, even if it’s a risk, I’ve learnt that its one worth taking….

     

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    Parents

    Being The Mum Of A Vitiligo Girl..

    When the first signs of Vitiligo appeared when I was 2 years old, my parents didn’t over react, even though they had no idea what it was. As a mixed race child, with fair caramel coloured skin, there was little chance of the distinctive white patch, no bigger than a ten pence piece, appearing unnoticeable.

    Naturally, my parents had questions they wanted immediate answers too. Was it a discoloured birthmark? Was it irritating my skin? and most worryingly of all…..was it going to spread beyond my hand?

    My Mum quickly booked an appointment with our GP in hope that a prescription of antibiotics would remedy the problem! However, unbeknown to her, the problem was much more severe than that and would develop into a condition she had never even heard of.

    So how does it feel when you notice the first patch on your babies beautiful skin? Confused? Angry? Frustrated by the lack of information available on the condition?

    How does a mother respond?

    As the mother of me, here’s how mine responded….

    Finding the first patch….

    As a parent, noticing the first patch naturally sends you into a state of panic. Shock even especially as you have no clue what it is or why its developed. Back when I was a child, Vitiligo was a relatively unknown condition and so when she took me to our GP, he wasn’t able to confirm what it was. The advice she was given was simple; keep an eye which is the last thing any parent wants to hear. She wanted to walk out of the surgery with a diagnosis and a remedy that would clear it within a matter of weeks! Instead, she had to remain patient and watch to see if it was something that would develop or stabilise. She was incredibly frustrated by the lack information.

    The diagnosis

    I was officially diagnosed with Vitiligo 24 months later. Up until the point when I was diagnosed, I’d made a second visit to our GP who still wasn’t able to confirm it was that. The patch had slowly started to spread, covering my arms, legs and worst of all, my face. A referral to a Dermatologist at Great Ormond Street Hospital was when it was confirmed as Vitiligo and that it was incurable.

    Being the mother of a child who is ‘different’…

    One of the hardest things for any parent to face, is ridicule towards their child. It makes them feel helpless. My Mum found the stares and inquisitive questions difficult to accept initially, but gradually developed the understanding that people were curious. Occasionally she would turn a blind eye if she noticed people looking, but other times, depending on how intrusive people were being, she would explain what it was. My Mum recalls an incident on the bus when I was 3 years old. Sitting in my pushchair, with a lolly pop for entertainment, I had caught the attention of two women who were initially talking amongst themselves. They noticed my patchy legs and whispered to one another that my parents were irresponsible for leaving me to burn in a fire! Naturally, my Mum was infuriated by the assumption and made a point of telling them that wasn’t the case!

    My Mum got used to people looking. She refused to cover me up and allowed me to wear shorts, t-shirts and swimsuits on holiday. As far as she was concerned, I was an ordinary child with a skin condition. Simple.

    Support Groups

    There were very limited support groups available in the UK when I was a child, but my parents did attend events at the Vitiligo Society which helped her, not only understand the condition, but meet with other parents who had children with the same condition. Being part of a support network meant she felt supported and not so alone when it came to raising a child that was ‘different. The Vitiligo Society continues to run the annual Vitiligo Society Conference (normally every October) and also runs a parents group every Tuesday & Thursday from 10:30 to 14:30. For more information, please call; 0800 018 2631 or 020 7798 6051. Alternatively, you can email: general@vitiligosociety.org.uk

    The best piece of advice from a mother to another….

    Don’t treat your child like they are different. Natalie’s Mum says “I chose not to hide Natalie away by giving her the freedom to wear whatever she wanted. She wore shorts during the summer and swimsuits on beach holidays. I wanted to instill confidence into her from a young age and make her understand that being different doesn’t mean you are any less beautiful. As a parent you will naturally be protective and I knew I would have to be extra strong for her, so that she could deal with the potential challenges and judgement she may experience as an teenager and later, a young woman. I prepared myself for those times when she would come home and tell me that kids at school had said something spiteful about her skin. Being a ‘step ahead of the game’ makes dealing with those issues easier”.

    How did your parents react to your very first patch? Feel free to share…..

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    Personal Experience

    Life With Vitiligo: The Early Years

    I became part of the 1% of the worlds population that suffered with Vitiligo, in 1984 at just 2 years old.

    Its life started in the form of a white patch on the back of my hand on my mixed race skin. The patch was a stark contrast against the colour I was supposed to be and hoped I would always be.

    I wasn’t diagnosed straight away. Back in the 80’s when I was a little girl, vitiligo was a relatively unknown condition, especially in the UK, so it was difficult for my GP to say exactly what it was. Apparently, he inspected the little mark on my hand before telling my parents to ‘keep an eye’. No cream. No antibiotics. No nothing.

    So, that’s what my parents did. Everyday they’d inspect my skin, looking for more patches. Any new marks on my skin would instantly alert them and have them questioning whether it was the same as what I already had.

    Being mixed race, my first patch was very prominent. Naturally I was supposed to be caramel colour, a mix of my parent’s genes, so understandably they were paranoid about anything appearing on my body.

    More patches came. Slowly, covering my arms, legs and worst of all, my face. I went back to my GP who instantly referred me to a Dermatologist at Great Ormond Street Hospital because he still couldn’t say what it was. It was there it was confirmed I had Vitiligo and it was incurable.

    ….and so my journey started. I went from being an ‘ordinary’ child to a hospital patient, subject to regular skin check-ups and being subscribed regular treatments, to try and slow down the development of more patches. With my skin being so young, my Dermatologist was reluctant in prescribing me anything that could potentially damage my skin in the long run. I started using Eumovate, a thin steroid type cream that I applied to the patches on my face, twice a day. We had to persevere. My skin wasn’t going to change overnight, but my parents quickly became rigid about making sure I applied as instructed twice a day. I remember being in hospital a lot….playing with toys in the waiting room as I waited to hear my name over the tannoy, instructing me that they were ready to perform another ultra violet x-ray to see if any more patches had formed.

    I was later prescribed Betnovate for my body, a potent steroid cream that could be applied to larger areas where Vitiligo existed.

    I didn’t realise I had Vitiligo straight away. I could barely talk when I was two, let alone know I had a skin condition! Everyone saw my skin. My parents didn’t hide it and so I quickly thought, that there were loads of us out there with what I had. I realised I was completely wrong when the questions started and kids wanted to know why I was different…..

    I stuck with the treatment. Just a few creams that Mum would rub into my skin. Easy enough. Thankfully, the Eumovate eventually cleared the patches on my face, but I wasn’t so lucky with Betnovate and with the risk of skin thinning, stretch marks and making my skin condition worse, I stopped using it after 12 months.

    Being a little girl with Vitiligo was the easiest thing in the world! My parents done the job of protecting me, meaning I didn’t have to deal with the questions, assumptions and curious stares. I had no clue what it meant to ‘love your skin’ and be confident with who you were, because in my world, I was just being me. Of course this wasn’t going to last. Not in our image obsessed world anyway……

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    Personal Experience

    Why Blog? Why Now?

    When I decided that I wanted to blog about my experiences with Vitiligo, I didn’t have a clue where to start. I was 33, had lived with Vitiligo all my life and hadn’t delved too deeply into my past as a girl with the skin condition that affected just 1% of the worlds population. I could probably write a great ‘about me’ page (with endless edits!) and a piece on how my journey started, but beyond that I didn’t think I had much to say…..

    Revealing who I was as a girl with Vitiligo, meant having to ‘open up’. Opening up about something that was very personal to me and that, for most of my life, i’d deliberately shut out because it wasn’t something I wanted to talk about. I was happy stepping out into the world as someone who ignored it, but deep down inside, it was impacting who I was and  how I felt about myself. I didn’t realise there would be a time when I would refer to myself as just ‘Natalie’, without my skin playing such a big part in how I saw myself…..

    My moment of ‘readiness’ came after an appearance on London Live. Being interviewed on live TV, knowing I was being streamed into peoples living rooms, became my way of saying ‘I have Vitiligo and I’m okay with it’. I was okay because I had reached a point where I was able to talk about the one thing that had caused me such discomfort in the past…

    So I started to write, and the more I wrote, the more I developed ideas on what I wanted to share. I drew inspiration from lifestyle magazines, other people’s experiences with Vitiligo and transported myself back to my childhood when life (unbeknown to me) started to move towards a different direction, when I realised I was different…

    A year ago, in 2015, I wrote my first post. I was mid way through having UVB Narrowband treatment, which was miraculously proving successful after just 5 months. My future, vision and attitude towards how I felt about myself was starting to change and my ability to feel comfortable talking about the one thing that had hindered my life for so long, was no longer a forbidden subject……

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