Living Pretty With Vitiligo My blog - December 2016 – My blog
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December 2016

    Parents

    Talking To Your Child About Vitiligo

    “Mum….these are my favourites. Can I wear them to playgroup today”? I pleaded, as I gripped onto the tiny pair of pink shorts with both hands, preying I’d get the chance to wear what I wanted, as opposed to Mum choosing, like she normally did.

    It was a warm day in July; we were comfortably into the six weeks holidays and the local playgroup centre that arranged kids activities for the community that lived on the estate, were organising a picnic on the green. All the kids were likely to be there.

    …So here I was wanting to wear my much loved shorts which of course revealed my bare legs that bore the evidence of Vitiligo…

    The best thing my parents ever done was openly showed that I wasn’t different to anyone else. Developing Vitiligo at such a young age meant it was my parent’s responsibility to explain to me why my skin wasn’t quite the same as everyone else’s, and until that conversation came, they would be speaking on my behalf. Explaining to those who were curious, pre-warning the teachers in my school and most importantly, laying the foundations in terms of teaching me how to love my skin.

    Growing up, I didn’t ask many questions about my skin, as it was never made a topic within our household. Naturally, my parents were well aware of the implications that could potentially arise at school, especially as I was the only one out of 600 students in my primary school, that had multi-coloured skin.

    On my first day at school, my Mum showed up at my classroom, 10 minutes ahead of the bell. It was an opportunity for her to explain what Vitiligo was and pre warn ‘Miss Lock’ that the other kids may ask questions and how she should respond. My parents were very specific with how their words , in terms of how they explained to others and most importantly, how they explained to me….

    Explain to your child as soon as they’re old enough, what Vitiligo is….

    Only when I started questioning my skin, did my parents explain to me what it was. Prior to that, they didn’t feel the need to sit me down and officially explain the science behind Vitiligo! They kept it simple by explaining the basics behind the condition whilst reassuring me there was nothing wrong with having Vitiligo. They were clear in that it didn’t change me as a person nor did it affect my ability to do anything, such as go swimming or play sport in shorts! They often reinforced the fact I was a pretty little girl and that looking different didn’t change who I was.

    Instil a strong sense of identity and self-esteem….

    My parent’s biggest priority was making sure I was comfortable and confident with who I was even though they knew realistically, I wasn’t going to be seen as ‘normal’ by everyone. They were effectively up against anyone I would come into contact with, and who may question why I looked different. They wanted me to be able to handle questions confidently and not retreat or shy away in embarrassment if someone was curious. Sometimes they’d ask me to explain what Vitiligo was, just so they could see how I’d react and how I might answer! Of course my parents would tell me how lovely and pretty I looked prior to a school friends birthday party or when they dressed me identical to my sister, but they didn’t over do it. These days, with the world’s obsession with beauty, it’s important for children to understand the importance of embracing their indifferences. Explaining and ensuring they understand its okay to be imperfect and that those with ‘flaws’ will discover the same love as everyone else.

    Encourage your child to step outside their comfort zone

    My parents were well aware of the situations I found comfortable. Sticking to my small circle of friends, not going anywhere that meant having to be around large groups of unknown people and sitting quietly in school and remaining unnoticed as much as possible were the environments where I felt most the most relaxed and myself.

    Like most parents, mine wanted me to move between zones, without too much pressure. However, this is something very hard to do, as children don’t always understand your logic and will often refuse without much reasoning if something out of the ordinary is presented to them. My parents would encourage me to attend the playgroup centre or after school activities, by arranging a friend or my sister to come along. That way I didn’t feel so alone and always had someone to turn to if I felt anxious. Eventually, once I was familiar with the environment, I was able to go alone.

    Help your child to accept Vitiligo…

    As parents, it may be that you feel helpless because you feel as though your child is going through the ‘challenges’ alone. Whilst this is ultimately the case, especially as they get older, the support you provide is imperative and is everything they need during the difficult times. Instil that their appearance is only a small part of who they are. Voice statements such as;

     “My skin is normal, it just isn’t the same as everyone else’s”

    “We’re all different and unique”

    “My Vitiligo is part of who I am and it’s a part of me I love and accept”

     The early years are informative and memorable years. Make sure you teach and guide them towards understanding that being different is very much a part of the world we live in….

     How do you talk about Vitiligo to your child? Please feel free to share!

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    Personal Experience

    Overcoming My Fears of Public Speaking

    I remember the first time I learnt about ‘Power Poses’. I was at a business networking group, London Women in Finance – Career Coaching Group, and the host had asked us what we would do to boost our confidence before a speech. Prior to learning about this new concept, introduced by Amy Cuddy, my answer would have been ‘have a coffee, stay calm, practice and pray’!

    So what exactly is the ‘Power Pose’ strategy that seems to have skipped past me without me realising?

    Well, some of it has a little to do with Wonder Woman and her ability to stand tall! Hands on hips, chest out and shoulders back. A pose that connotes power, confidence and increases your ability to deal with anxiety or stress….and the best thing of all, it takes just two minutes to do!

    So why am I telling you this?

    A few weeks back, I was standing in front of a small group of people, preparing to share my story.  I had agreed to give a speech entitled, How to overcome your inner critic, raise your visibility & get noticed at work and quite naturally, I was feeling a little nervous about addressing an audience. Seconds before speaking, I felt as though a Power Pose was what I needed!

    Although I’ve spoken publicly on a number of occasions, I’ve never managed to become a fan of public speaking, even though the reaction by others has always been positive. I’ve always felt as though its something I’ve wanted to master and so watching Ted Talks, an initiative set  up to spread ideas in the form of short presentations, has helped me understand and observe how to address a sizeable audience and the art of keeping an audience engaged.  Its a great source of information for anyone looking to improve their public speaking skills.

    The event, where I was speaking, was held at an intimate private venue in Angel & Islington and was an opportunity to share my past experiences with Vitiligo, whilst bringing some focus around being different in the workplace and the challenges with adjusting to a new working environment.

    An interesting Q&A session followed, which raised some insightful questions, mostly around how i’d gone from being an overwhelming shy woman to someone who was able to address an audience about something that was once very personal. The few months I had to build my speech and prepare, was an interesting experience as I was conscious about engaging my audience and giving them something that was ultimately thought provoking. I adopted tactics often used in public speaking and focused on being prepared and how to eliminate the potential arrival of nerves of the day….

    Plan and Practice

    The most obvious tip of them all! I was practising for weeks leading up to the day. I didn’t want to rely on a scripted piece of paper. I wanted to present my story naturally, after all, it’s one in which I should be comfortable telling! Feeling prepared makes you feel confident and helps with keeping nerves at a distance when its time to stand before your audience.

    Engage your audience

    Keep your listeners at the forefront of your speech. Include them. Engage them and evoke interest in your topic. Whilst you may ultimately be speaking about yourself, try and tie sections in with your audience to keep their attention. Open with a general scenario that they could find themselves in. Make it so you can potentially persuade them to do something they may not have done before. If you can bring them round to your way of thinking it can be incredibly empowering.

    Write key words on index cards and don’t be strict about sticking to it!

    Key words can act as simple prompts during the speech. Key words helped me avoid the temptation of reading from paper, line by line. After I had got past my first index card and felt like my speech was flowing, I stopped looking at the cards and was pretty much able to deliver without too many glances at the cards before me.

    Record your voice (great apps on the iPhone!) to judge pace

    Nerves can often make you race through something, because all your thinking about is the ending, rather than living in the moment and addressing the audience in a calm manner. Im always conscious of my need to slow down to ensure I come across clearly. Whilst speaking slowly doesn’t come naturally to me, it’s incredibly important you speak at a good pace. It’s more engaging, allows you to be more expressive and makes you feel more relaxed throughout.

    Arrive at the venue early

    Im terrible with lateness and im often the one hanging my head in shame as I give my apologies for being 10 minutes late! But when it comes to attending a networking event or presenting, I make sure im at least 10 minutes early. There is nothing worse than rushing to  an event in panic mode, as it completely throws you off course. To feel relaxed you need to arrive relaxed. Your journey to the venue can either be going over speech material or simply a peaceful journey to gather your thoughts.

    Treat yourself to something beforehand.

    I’d never turn down the chance to treat myself! Im not saying run out and buy yourself a new Karen Millen dress or a piece of fine jewellery, but something small that you can enjoy beforehand. Mine is definitely a latte! Apart from being calming, it’s nice to look forward to something especially if you’re feeling nervous.

    The event organiser, Philippa Ibe, very generously gave me a testimonial on my deliverance:

    What I loved about Natalie’s talk is that it was fresh and real. She shared a unique yet relatable story covering themes such as body confidence and self worth. Her story is truly inspirational, moving and a real joy to see her grow into her own as a speaker. I look forward to seeing more of Natalie giving talks”.

     

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    Personal Experience

    Why World Vitiligo Day is a Breakthrough in our Community….

    On June 25th 2011, Steve Hargadon, founder of the Vitiligo Friends Network and Ogo Maduewesi, founder of VITSAF, officially launched the first ever World Vitiligo Day. One of the key aims when formulating the event, was to raise awareness of Vitiligo that affects just 1% of the world’s population (around 50 million people worldwide). Fast-forward five years and World Vitiligo Day is an internationally recognised event that brings together thousands of people who have something uniquely in common.

    Having an official day that celebrates the beauty in our patches is an incredible breakthrough. The last event on June 25th which was held in Washington, was an upbeat celebration attended by thousands (unfortunately I couldn’t find exact figures!). The campaign launched in correlation with the event was ‘walk in our shoes’ which asked that family, friends, colleagues and those with Vitiligo, to wear a temporary white tattoo on an exposed area of the body in hope that it would raise curiosity and encourage people to ask questions. The overall idea was for people to recognise what its like to be stared at when something about you looks different.

    So, with the 25th June very much set in concrete, why has World Vitiligo Day become such an important date in the calendar…..

    WVD makes you realise where we are NOW…..

    Twenty-four years ago when I was a vulnerable 10-year-old girl; I was convinced I was the only one in the world who had Vitiligo. I very rarely came across anyone who looked like me and so my awareness of those across the globe that were also affected, was non-existent. Social networking didn’t exist; neither did meet up groups or events that would bring everyone together. There used to be a huge social stigma with being different. You were highly likely to be judged, ridiculed and thought upon with sympathy because you didn’t conform to the norm. Now with social media changing the way we communicate and present ourselves to the world, more and more people are embracing their patches in the photos and stories they share. The forums and groups are encouraging and positive, proving that we too, can be just as comfortable in our skin.

    WVD is more than just bringing people together…

    All the planning, organising and liaising brings together an agenda that provides a significant opportunity to raise awareness. Explaining what Vitiligo is to those who are guilty of staring and making comments. Cutting out the ‘what is it?’ questions. The curious questions that lead people to believe it’s the result of being burned. Having adults and children understand that it isn’t life threatening or contagious, which is a common question (and myth!) that often gets asked. It’s an opportunity to talk about the psychological effects and the solutions and build around improving the quality of life, ones self esteem and confidence.

    WVD is an opportunity to learn and feel confident about your skin…

    Being amongst a group of people whereby you share something unique in common is incredibly empowering. The energy levels are often high and you end up soaking up the incredibly positive atmosphere. A group where you feel a real sense of belonging can often make you feel comfortable about opening up and sharing your journey, however difficult. It also allows you to look at yourself from a different perspective especially when you see others who are confident in their skin. Seeing others can have a real impact and eventually have you feel more accepting of your own…..

    Plans are already underway for the 2017 event which will take place in Sao Paulo, Brazil, with the agenda likely to feature tips on applying makeup, people led stories, experiences and testimonials and expert advice from Dermatologists on the latest global research. I’d love to make it! If not, I’m happy to wait until London becomes the hosting nation…

    Have you ever attended a world Vitiligo event?

     

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