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

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    3 Things That Happen To Every Girl With Vitiligo….

    As a girl with vitiligo, I know what it’s like to have moments of weakness. I spent many years hiding away, not wanting to talk about my skin or answer questions. Instead, I tried to ignore my skin – to turn a blind eye to the one thing that impacted my life the most. I wanted the world to see someone that was confident, even though deep down inside I hadn’t accepted who I was on the outside.

    Fortunately, after years of working to build my confidence, I’ve learned to accept and love the spots I was born with. And while I recognize that I don’t quite fit in with the strict parameters that the media forces us to believe is beauty, I understand that beauty comes in many forms. And beauty does include girls like me.

    While my journey with learning to love my spots still continues, here are some of the things I’ve learned that are “okay” and “normal” when you live with vitiligo…..

    Read my guest post in its entiretery on Living Dappled…

    3 Things That Happen to Every Girl with Vitiligo

     

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    Personal Experience

    The Negative Impact of Social Media

    Every minute of every day, 684,478 pieces of content is shared on Facebook, 3,600 photos are uploaded onto Instagram and 6,000 tweets are sent every second. The power of social media in todays generation!

    I consider myself to be a ‘low’ user of social networking…..uploading photos of last night’s takeaway or checking in whenever I’m out in the City, just isn’t my thing. However, there is no denying that social media has power, significantly changing the way we communicate, run our businesses and even purchase products.

    It has often been pointed out that social media has damaged the art of conversation in that people are now less likely to communicate face to face, even something I am guilty of (I love WhatsApp!), however, when it comes to connecting people globally within the same common interest group, it is considerably beneficial.

    As a child, one of the hardest things about having Vitiligo, was not knowing anyone else with the condition. The emergence of social media changed that when people were given the opportunity to connect. When groups such as the Vitiligo Society, Vitiligo Pride and embrace your Vitiligo were formed, it became an awakening to the fact I really wasn’t the only suffering with Vitiligo.

    Being in the UK, I’m part of the Vitiligo Society Group and today the charity has just under 4000 people within its community, with joiners from the UK and beyond. It’s a supportive group where people can open up, share stories and ask questions about treatment or anything they may be concerned about. After all, if there is anyone who can answer a question about Vitiligo, it’s a fellow Vitiligan! It’s an insightful, yet amazing group to be apart of and I for one have benefitted from some of the information shared about treatment and new research. I love seeing people upload photos showing off their patches with pride! To me, it signifies acceptance, confidence and the ability to love yourself even if you are different. It’s inspiring and reminds me of the importance of loving the skin you’re in.

    Whilst most of the content in groups is incredibly positive, unfortunately, a few weeks back I came across something I didn’t like! As I was scrolling through the society page, I came across a touching post from a lady who had recently developed the condition. From how she spoke, you could sense she was struggling to come to terms with her changing skin as she spoke about her experiences with Vitiligo. She pointed out that her biggest concern was the difficulty in obtaining a diagnosis by her GP, the effectiveness of camouflage cream to cover her patches and the best products available for protecting her skin against the sun.

    I read her story with sadness and was tempted to reach out. Having had Vitiligo since I was 2 years old, I know no different. However, I have often felt that it must be incredibly hard for someone to develop Vitiligo as a teenager or adult, as they are experiencing the change right before there eyes. As I was reading some of the comments left by others in the group, I came across a response by a rude and insensitive man who suggested she should ‘accept and move on’ like she was behaving like a drama queen!

    I was completely dumbfounded by the insensitivity that he was showing towards a lady that was clearly feeling vulnerable. I wanted to respond back in frustration however, rather than typing frantically I decided to answer here instead….

    Just Forget About It…..

     The one thing someone with Vitiligo cannot do. We see our patches all the time…they are visible to us 24/7. And whilst some people can accept and love their spots, for some the journey towards self-acceptance hasn’t quite reached them yet. It took me years to accept the way I looked and I can honestly say, it was a lengthy journey with many ups and downs. For some, Vitiligo cannot be forgotten about. You’re always worrying about the next patch or whether your skin is well protected during the summer. It’s not just about what you see on the surface, how you are dealing with it on the inside is equally important.

    Do Your Own Research….

     This was in response to the lack of knowledge from GP’s and Dermatologists. Now, whilst I agree that obtaining a diagnosis can be incredibly difficult (especially back in the 80’s when I was a little girl!), we have come a long way in that Dermatologists and GP’s are more able to quickly identify if someone is developing Vitiligo because it has become more widespread. Medication, although still very limited, is more likely to be instantly prescribed without lengthy delays and multiple appointments to your GP. Yes, I agree we should all carry out our own research as there is plenty of information available outside the Doctors surgery, but I personally think anyone’s first point of call should be the Doctor.

    Get Over It..

    How awful does that sound! This is one of the worst things you can say to someone who has a skin condition. No one has the right to tell someone to ‘get over’ something that clearly affects them. Having a skin condition is a very personal battle and whilst the biggest tower of support is being around others with the condition, you are still ultimately managing the condition on your own. Someone who has fairer skin will have a completely different experience to someone who has darker skin, mostly because patches on darker skin is more

    noticeable. Everyone deals with Vitiligo in their own way therefore no one has the right to suggest its something they should ‘get over’. Sorry to say, buts it not that easy…

    Have you even come across someone with lack of empathy on social media? Feel free to share….

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    Personal Experience

    “Something Told Me To Try Once More…So I made The Call To My Doctor…”

    Procrastination infuriates me, yet I still find myself doing it all too frequently. Very rarely do I agree to something unless I’m certain it’s the right choice to make. I’ll spend ages thinking about it, weighing up the benefits and trying to eliminate the reasons why I shouldn’t go ahead with whatever it is! However I vividly remember in 2014 when I made a life changing decision without any procrastinating at all…..

    I remember the day I called my GP. It was a Friday morning in January. Typically freezing cold. I was standing in front of a full length mirror trying to choose something that was warm enough to keep out the bitter chill in the winter air. My mind drifted (as it often does!) and I began intently studying the tiny brown spots, on my bright white hands, almost as though visualising life without them. They looked like splashes of paint, disconnected….randomly spread across my hands. Over the years I’d seen new spots come and others go, and it always worried me, that one day I would potentially turn completely white.

    Ironically, the call to my GP came when I had finally reached self-acceptance. I felt less insecure about my skin and recognised that Vitiligo didn’t define who I was. Yet here I was calling my GP asking if I could be referred to undergo UVB Narrowband Treatment….. In doing so, this raised the question of why all of a sudden now did I want to undergo treatment for a skin condition I now finally accepted?

    Treatment doesn’t mean you hate the way you look

    Whilst internally, I’d accepted my Vitiligo, loved its uniqueness and knew that it didn’t define who I was, on the surface; I still wasn’t comfortable revealing my patches. Sure, I was open to wearing t-shirts, maxi dresses and sandals in the summer, however, going that extra mile and openly wearing a swimsuit on holiday or a pair of shorts during the summer wasn’t something I allowed myself to do. I struggled to feel comfortable without my skin being at the forefront of my mind.

    I often visualised my body without its patches. My imagination took me to a place where I felt comfortable. I had clear, flawless skin like my friends and was able to wear whatever I liked without preparing my skin with tanner a few days before the weekend. I didn’t struggle during the summer because I had more freedom with what to wear. I chose beach holidays over City breaks because I no longer saw the sun as a hindrance.

    Discovering UVB Narrowband Treatment

    UVB Narrowband Treatment was suggested to my parents as treatment, when I was 6 years old. In simple terms, this type of treatment entailed standing inside a machine that resembles a tanning booth. Unclothed, you would stand inside for a matter of minutes whilst UVB light filtered across the areas of Vitiligo, stimulating the patches on the skin.

    Whilst it was a relatively safe treatment, there was a 1% risk of developing skin cancer at a later stage and so with me being so young, it wasn’t something my parents wanted to risk and so declined to register me as a patient.

    Fast forward to my 30th birthday in 2012. More patches had come and gone throughout my lifetime. Social networking had become a ‘way of life’ and so I started connecting with others who had Vitiligo. Others with the condition would discuss anything from makeup to fake tan to how it was being a child that was different. However, the one topic that kept reappearing was people’s experiences with UVB Narrowband treatment. I became curious and carried out my own research, wondering whether it was something that might work for me.

    It took just 5 minutes for my GP to refer me

    When I arrived at my GP’s surgery, he took a quick glance at my skin and within a matter of seconds he agreed that I could go ahead with treatment. I’ve had longer appointments when I’ve had cough like symptoms! He asked me the usual questions that I’ve spent my entire life answering such as ‘when did it start’? Where was your first patch? Which areas does it affect now? I then rolled up my jeans for him to take a look at my legs, after which he spun round in his chair and typed up a hospital referral letter.

    I was very pessimistic; after all, I’d spent alot of my childhood going back and forth to Great Ormond Street hospital, for various treatments that had amounted to nothing. Nevertheless, when I noticed the confirmation letter waiting for me when I got home from work one evening, I felt a sense of excitement. I felt like I was once again about to embark on a lengthy journey that would be one of two things; a major success or a complete disaster….

     

     

     

     

     

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    I would love to hear from you if you wish to collaborate. I currently offer the following:

    • Guest posts
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    • Guest Speaker
    • Workshops

    You can contact me at beingjustus@yahoo.com to discuss, or if you want to drop me a line to just say ‘Hi’…

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    Interview with London Live

    My first experience at talking to the Media, was an appearance on London Live in September 2014. You can access the VT recording here. Agreeing to be interviewed on TV was particularly daunting as i’d never publicly spoken about my condition before. Why would I!    I wasn’t sure if I was ready to open up about the person I was with Vitiligo. I apprehensively agreed and it turned out to be one of the most liberating things i’ve ever done….

     

     

     

     

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