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    Personal Experience

    Being Just Us is a Year Old…

    This time a year ago Christmas had already crept into my mind. I was pondering on what presents to buy family because I didn’t want to do my usual and rush around two days before, and I was giving thought to how I would spend twixmas because once again I was finishing the year as a single woman! I was also dreading the end of October when the clocks would go back and another cold and dark winter would officially kick in.

    It was also round about the same time that Being Just Us was born. At the time, I’d been writing blog posts for the past 6 months in draft mode because I was apprehensive about revealing my skin in photos and opening up about the thoughts and feelings I’d been storing for the past 10 years. Writing my first post, ‘About Me’, followed by ‘Life with Vitiligo; The Early Years’ made me realise just how important my story and journey was to me. It became my new writing outlet (as opposed to scribbling in endless notebooks!) and I was excited by the prospect of it being public….one day, when I was comfortable.

    Looking back, I wasn’t certain I’d see a year, which I hate to admit as it meant I doubted keeping it up. Working full time, volunteering as a mentor and managing my social life, family life and all the other various things that filter into life, I was convinced I’d end up neglecting Being Just Us, after all, the only person it would impact is me.

    So this post is about reflection…naturally. Looking back over the past year and asking myself ‘What have I achieved and will ‘Being Just Us’ see another year after this one….’

    A lot has happened in 12 months. Some things I knew about…others I didn’t. Since allowing myself to feel comfortable within my skin, ive always felt growth is a continued feeling without having a shelf life….which is what this year has felt like. I am still conscious of my skin, however these days it doesn’t act as a ‘barrier’ to anything I want to do. This year, I enjoyed short breaks in Madrid and Valencia and loved that I was flying into 40 degree heat. I felt completely unfazed by how hot that would be, because I was more excited about wearing my new ‘summer wardrobe’ that consisted of dresses in nude shades, midi dresses and my favourite blushing pink pleated skirt with slits up the sides! It was a 2012 buy that I wore for the first time in 2016!

    I know longer need people to ‘validate’ my look. I recall on so many occasions checking with friends or with my Mum, asking if ‘my legs looked okay’ in my denim shorts. On on their ‘say so’ I’d atomically feel relieved and ready to leave the hotel room (it was always whilst on holiday!). Now I get ready, give my self the once over and confirm myself ready because I know I should be able to walk the streets in whatever I feel comfortable in. Its liberating!

    In relation to being a spokesperson for Vitiligo, the opportunities have been constant. Earlier this year, I became a Trustee at the Vitiligo Society. A charity, which I became a member of in 1986 because my Mum wanted me to be part of a ‘community’ of people that had what I had. So to now be an influencer in how the society operates is an honour. I’m a real people person, so being the Social Media and Community lead, is the absolute ideal role for me! As part of my role, I get to manage all our social networking platforms (I grew The Vitiligo Society Instagram page from scratch!), interact with support groups and individuals and I also liaise frequently with magazines and TV production companies who are creating opportunities for Vitiligo to be in mainstream media. I joined the Society at an exciting time as they are currently going through digital change. We recently introduced a guided meditation app for those with skin conditions, have relaunched the annual open day which takes place on Saturday 11th October and we are soon to go live with a new story telling platform, The Vit Life. Working at the society does take up considerable time, but its time I love investing.

    I’ve also worked closely with two other amazing charities who strongly support those who have an ‘altered appearance’. Changing Faces, who campaign for face equality, and the British Skin Foundation, who invest time into research for various skin conditions. This year Changing Faces turned 25 and to celebrate they created a coffee table book which I was fortunate enough to be asked to feature in. Entitled ‘Faces of Equality’ (you can purchase a copy here), it was a great way to showcase and interview the various faces of Face Equality. I also recently attended a training session that would prepare me for speaking in schools about being body confident and living a fulfilled life, irrespective of what you look like. Addressing children has always been my goal, so to finally be in a position where I can speak out is an incredibly important step in my journey.

    In May, I recorded a segment with Dean Edwards, celebrity chef and Masterchef runner up! It was recorded for the Lorraine show on ITV and not only did Dean pop round to bake a heavenly banana cake, but we got to chat about life with Vitiligo and how its been for each of us growing up. It was incredibly inspiring to converse with Dean. The conversation felt so natural…especially when we started comparing our patchy hands….the only difference being my cherry coloured nails!

    Also in May, I was interviewed by women’s luxury lifestyle magazine, Phoenix. It was probably one of the best interviews I’d given because I was able to talk ‘freely’ without having my words misconstrued to mean something else. The photos that accompanied the interview were elegant, dark and really captured my Vitiligo in a beautiful light.

    Whilst I don’t want this post to be a CV of what I’ve don’t over the past 12 months, its great to have been given the opportunity to get involved in so many great projects and most importantly, that Vitiligo is gaining a platform which allows us to raise awareness in such a public way. Even now, three years after my first live interview on London Live, sharing my story still forms part of my own self-acceptance and further cements my ability to love the person I am as a woman with Vitiligo.

    2017 year hasn’t finished yet, and there is still more to come which I’m sure I will share as they take place. I love that I have a diary that I can fill with schools talks, interviews and opportunities to share about my journey…..and I hope this time next year, when I write exactly the same blog post, I’ll have even more positive achievements to share….. just bigger…

     

    Before I leave, I’d just like to thank all those that have read any of my posts, left a comment or even scanned through for a few seconds. I thank you from the heart 🙂

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    Personal Experience

    CHANGING FACES LAUNCHES FIRST EVER FACE EQUALITY DAY

    Last month, Changing Faces launched their first ever Face Equality Day, a major milestone for the charity who recently celebrated their 25th anniversary. Formed to raise awareness and ‘remind’ us to be respectful to people regardless of their appearance, it was a day that would collectively bring people together across the UK, to show support and unity for those with a disfigurement.

    The support was outstanding. Butterfly’s, created as the emblem for the day, were worn and later shared on social media and a number of events took place nationwide to make sure the message reached far and wide! The report itself entitled ‘Disfigurement in the UK’ was published on the 26th May, now officially Face Equality Day.

    The report, based on a survey of more than 800 people, revealed some shocking findings that related to all areas of life, for example, four fifths of those with a disfigurement have avoided applying for a job because they believed their appearance would hinder them at the interview, whilst more than four fifths of people have experienced harassment from a stranger or unpleasantness relating to their appearance. The report was proof that things need to change.

    I remember completing the questionnaire at the beginning of the year. The in depth survey really got me thinking about my personal attitude to my skin and how I managed situations where people would question what had happened to my skin. Whilst I feel fortunate that I have overcome a number of challenges and now fully embrace who I am with Vitiligo, every time I submitted an answer to a question, I thought about others who were doing the exact same task, who weren’t so confident about being different and still felt discriminated against because of a condition they have. A painful reality…

    To coincide with Face Equality Day, I was asked to speak with the lovely Jenny Campbell, an award winning poet and short story writer, and who runs a very successful YouTube channel. We had a chat about Disfigurement and its representation in the media….click the link to find out what I think about the media and how it portrays people who are different…..

    <iframe width=”560″ height=”315″ src=”https://www.youtube.com/embed/Isf46cOwhFs” frameborder=”0″ allowfullscreen></iframe>

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    Personal Experience

    SKIN MATTERS 2017 – MINIMISE THE IMPACT OF YOUR SKIN CONDITION

    Last weekend, I attended the Skin Matters conference in London……the first of its kind.

    Bringing together leading industry professionals, that included Dermatologists, Clinical Psychologists and panel experts, the aim was to raise awareness and further inform those living with a skin condition. The carefully planned agenda caused for an interactive day that benefited an audience that were mostly living with various skin conditions such as Eczema, Psoriasis and Rosacea.

    I was fortunate to be asked (by the conference founder, Lotte Benson) to take part in the ‘The Lived Experience’ which included myself (as someone with Vitiligo), alongside three lovely ladies who live day to day with those skin conditions as mentioned above. I got to meet the girls before the session at the end of the day, so by the time it came for us to speak to the audience, the energy (and nervous levels!) were pretty high! It was so positive and uplifting sharing the stage with 3 other courageous women who confidently spoke about their experiences and how they’ve learnt to accept themselves and live confidently with their skin. I definitely took something away from hearing them speak!

    Whenever im asked to speak, I always feel like I’m learning more about my own story as well as bettering my presentation and speaking skills, and whilst the whole experience can be pretty nerve racking (those nerves sometimes kicking in from the night before – eek!), its always a great feeling walking off the stage knowing I got through and survived!

    The conference was well received and is definitely needed as a way to bring professionals and those with the conditions together, because after all…our skin most definitely matters.

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    Personal Experience

    Phoenix Magazine: The Skin We’re In: Meet the Changing Faces Ambassadors Redefining Beauty

    The phrase ‘redefining beauty’ is a term so widely used that it should probably have a page created on Wikipedia by now! A term used across all media platforms globally; it expands and challenges the idea that beauty comes in many forms as opposed to the images we often see plastered in magazines.

    Since giving myself the freedom to speak about my skin, a number of opportunities with magazines have come my way, allowing me to speak about my journey as a girl with Vitiligo.

    My most recent interview was with Phoenix magazine, a luxury fashion and lifestyle magazine based in London and distributed internationally.

    The interview, carried out by the editor; Hannah Gale, was similar to what I’d done before; visually highlighting my skin whilst documenting my experiences with Vitiligo.

    The interview came about as a result of my role as a volunteer ambassador for Changing Faces. The final feature ‘The Skin We’re In: Meet the Changing Faces Ambassadors redefining Beauty’, included a stunning collection of photos in both colour and black and white and featured myself and two other inspirational women (also ambassadors), was published in perfect time, just ahead of Face Equality Day on Friday May 26th.

    Sometimes when I’m reading back over an interview I’ve given, I read it as though it’s someone else’s story. Bizarrely, It really enables me to appreciate and develop a closer connection with the person I am, as I read it and suddenly think ‘that’s me’….

    The full feature is available at https://www.phoenixmag.co.uk/article/the-skin-were-in-meet-the-changing-faces-ambassadors-redefining-beauty/

    Phoenix will feature the interview in the print version of the magazine later this year.

    Photo: Josh Van Gelder at www.theoldschoolstudio.co.uk

     

     

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    Personal Experience

    Sun Awareness Week 2017

    We all know just how important it is to stay protected in the sun, especially for us with Vitiligo. Since developing Vitiligo, my Mum has stressed the importance of using sun cream with the highest SPF. As kids, whenever we used to travel, both in the UK and aboard, Mum would smother my skin in sun cream before getting me dressed every day. She would always use factor 50 which, even though made me feel as though I was melting in the sun, always prevented me from burning or causing damage to my skin.

    As I got older and became aware that the ‘sun kissed look’ was preferred by the girls in magazines, I started to avoid sun cream altogether. I’d watch as friends applied factor 5 whilst on our summer holidays and convinced myself that just a little sun wouldn’t do any harm. When I realised that Vitiligo prone skin didn’t quite tan in the same way, I quickly learnt my lesson and reached for the sunblock instantly.

    Living in the UK, I’ve always brushed off the idea that the little sun we get will cause any damage, however I soon learnt that even the seven the lowest rays of sun can still have harmful and long lasting effects, even when hiding behind the clouds. Now, I always ensure that my makeup and moisturisers always contain SPF.

    So, what does the sun mean to us with Vitiligo?

    Due to the lack of melanin in our skin, our patches are more vulnerable to sunburn because we have no protection against the sun. ‘Normal’ skin is protected by melanin (skin pigment) whereas for us, our patches mean we have no natural protection against the sun meaning we burn alot quicker.

    To stay well protected, it is vital you use a sunscreen; as this protects us from the ultraviolet lights that comes from the suns rays. There are two types of rays; UVA (long rays) and UVB (medium length rays). To keep our skin well protected, an SPF of 30 or higher is necessary, especially during the hotter months.

    What does Sun Awareness Week mean?

    Sun Awareness week begins on May 8th and was introduced by the British Association of Dermatology (BAD) after a survey revealed that eight out of ten people are failing to apply sunscreen before going out in the sun. A shocking statistic considering the dangers around exposing the skin in the sub. Sun Awareness Week is about increasing awareness around protecting your skin, making sure it is applied properly and reminder that sunscreen should be applied every 2 hours for maximum protection.

    For more information click here:

    http://www.bad.org.uk/for-the-public/sun-awareness-campaign/sun-awareness-week

     

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