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Not So Natural Progression – My Vitiligo Story

 Posted on 4th June 2021  11 minute read

When you have vitiligo (the white patchy skin – think 101 Dalmatians) it seems like you have an intensified ageing condition that steals your youth and robs you of your prime years. What happens when you are unlucky number 1 out of 100, the one percentile of humanity to be running around with vitiligo? Well, the nuts and bolts of it are that your body destroys melanocytes (this is your natural tanning mechanism/cells) causing skin to depigment. In other words, your body incorrectly identifies melanin as invaders (anti-bodies) and sends out the troops to shoot them down, leaving white patches in the various war zones. The patches generally begin developing in areas of high abrasion ie knees, elbows, hands, face etc. The blemishes stay that way or worsen with no real chance of remission and to date there is no proper cure for the disease. However, don’t go getting all excited as it’s not contagious and not something to be concerned about if you’re not symptomatic (patchy).

So, your body’s own army is staging what seems like a full-scale coup. Now being a Vitiligo Veteran having earned my patches, you notice your hair turning not grey but white like the purest, reflective snow. Ageing on a normal scale introduces a bit of grey on the sides or a dash of “salt n’ pepper” to add a little “debonair” to the profile-pic. Instead, it’s the hair you’d rather not have change; eye lashes, eyebrows, facial hair and you guessed it bodily hair,  and it’s not a polite take over either, its hostile like patches of sinking quick-sand falling through the earth.

Literally overnight whilst you are sleeping your outward appearance can transform, it’s like when you attend an annual family reunion, big noticeable changes have occurred in your relatives physicality which forms the basis for the year aheads family backend discussions “has he shaved that thing off yet?”. This brings about a fearful daily inspection ritual. Your mirror becomes the enemy of your morning, instead of checking your social media as you open your eyes, you find yourself flipping your camera direction on your smartphone to see if the moonlight somehow untanned your patches bigger whilst you were dreaming of being able to enjoy perfect blue sky and a bikini-ready pool day.

For most of us that suffer with vitiligo you will concede that the patches we are gifted with are often not what we had hoped for, you wish they could at least have revealed themselves in a more complimentary fashion. I had the Panda patches, white circles around my eyes and mouth during my high school years. High school’s already, Everest, K2 – bells and whistles summit – challenging enough with mere pimples to contend with!

Try wearing the Panda suit at first break in mid-summer African sunshine with a 1000+ kids trying to figure you out.

My Gran on my Dads’ side and two of my Great Aunts on my Moms’ side all have/had vitiligo. Anywhere between 20 – 30% of Vitiligo sufferers have hereditary links. At age seven when we threw in the towel and stopped explaining away my growing milk stains. I was officially diagnosed with vitiligo when I was 7 years old and although not life threatening, this condition has far reaching psychological effects which do indeed threaten ones’ life in many ways you wouldn’t dare imagine. Being visually different creates a psychosis of always feeling like you are on the outside looking in, never part of the click for real. Although I will mention, in my case this was because I was always observing, so I learned to find the level which has proven to be a valuable chameleonesque life skill to possess. One might argue this, by concluding that, as a result you don’t really focus inwardly developing your own personality and identity first and foremost –  and they would be right!

Bearing witness to my older family members advanced vitiligo covered skin as a child, struck me as unsightly, so when the penny dropped, I was under no false illusions of what my future would behold. I was overwhelmingly destroyed and my life had only just begun. Having known how it ends before it begins sets you up with an expectation or lack of hope that can’t be reversed. Sort of like when you light the wrong end of a cigarette. My introduction was however unavoidable and clearly the way it was all meant to roll out.   

My poor Mom – I look back at everything she did for me, her limitless patience and resilience with everything, she walked the road right next to me the whole way, I actually now view her in a saintly light (cue angels descending from above!). She most definitely saved my life over and over again, constantly talking me away from the edge, pursuing the next treatment, always giving me hope and lifting my spirits to fight another day. It’s very easy to give up, to allow the despair to take over. I have travelled a bit and I’ve seen people with vitiligo reduced to lying face down on the cold hard floor, body contorted and now just another dirt covered bump on the street with an empty can next to their heads, begging & hoping for just enough to survive one day longer outcasted by their uninformed communities.

I tried every treatment available through the years that were within reach. I participated in one or two noteworthy experiments I will share with you to illustrate my determination in my pursuit of just normality really. Not sure what the treatments official name was but let’s call it, getting a hell of a tan. I had to apply a liquid serum at home to affected areas which heightened my skins photosensitivity. I would then hide under a big towel in the car ride over to avoid overexposure and into the clinic like I was hiding from the Paparazzi. After confronting confused onlookers in the waiting area, they put me in a glass tanning booth which buzzed with blue light like you would imagine a time machine set in a 90’s film which supposedly filtered the good UV rays necessary for the healing. Needless to say the levels of exposure, were runaway horse difficult to control and I landed up each time with white pain, engorged, watery blisters everywhere which would unexpectedly pop and drain out at perfect moments, like when you’re standing in front of your entire classroom delivering a speech with oozing blisters on your face. The other treatments weren’t much different unfortunately. I elected to miss out on a gap year in Vermont USA (which we had prepaid for my place) after graduating high school to test a new “cutting edge” laser treatment which burned me in all too familiar ways, but with a far more acute instrument. I endeared it this time for a much longer period to make sure I got the most of it. Six months of probono blisters was not really the fancy-free working holiday gap year I had anticipated but at least it didn’t cost my folks the 750k worth of medical fees they would normally charge for the treament. Not even a freckle to show for it! Anyway after my last session where they tried to remedy the blemishes of my unmentionables with a laser gun, I decided to call it a day with my search for the cure. I finally after fourteen years gave up and decided to live with it.

Heightened stress is said to accelerate vitiligo. Well in my case around my mid-twenties like a wind-swept forest fire my vitiligo reached 100% coverage. Needless to say I was feeling anxious and basically stressed all my skin completely white; no melanin, no patches, just baron scorched earth. This unknowingly became a good thing.

I discovered self-tan.

My new journey of trial and error was about to begin. So far, I had done everything to cover up my blemished body and traumatised mind and soul. I wore long clothes and pasted on thick sunblock in the intense African heat to avoid tanning and therefore try and minimise the contrasting skin colours for an entire decade long, it was a little uncomfortable to put it mildly. What made it possible at all was that my old friend Teza, without ever saying a single word about it, did the same, he jumped on the bandwagon and wore long clothes for the duration alongside me – an absolute display of friendship and kindness you could ever imagine possible – legend mate! Beyond that I grew awkward unfashionable hairstyles and beards and adopted a nonchalant grungy bad-boy demure with a sleeping violent dragon undertone to ward off any enquiry.

Self-tan had a tone of promise about it. I felt I could master what is an artful skill, orange streaks, dark knees and elbows, glistening caked hues accumulated in the hairlines, finger nails and hands like I was scratching through a lorry full of MSG coated maize snacks, quite frankly it was just like having vitiligo all over again but in a different self-inflicted way, this time. However, I was no stranger to the uphill battle and I persevered and to my eventual advantage, self-tanners developed and became really very good! I managed to steal back a semblance of normality, people mostly didn’t even know that I’m literally a “white albino in a sense”. Self-tan allowed me to walk tall amongst the herd.

I enjoyed a great couple of years with only occasional ridicule when someone would notice I was wearing self-tan. Time whizzed by as I grabbed back at the spoils of the everyday existence and then almost by magic, my beard turned white in what seemed like an over-night lightning storm. This is the sudden frustrating and unpredictable process with this thing!!! which if im going to be fair is exascerbated by denial – “it isn’t, it isn’t, it isn’t oh it is and it’s so so noticeable”. I had a brand- new hurdle to overcome now. So, I attempted to hide my whiteat 30 years old beard.

I suppose this is the gig right!

Until one day a good friend of mine Frank motivated me enough to grow it out, “grow out the beard” he said, “it would be cool and beards are very in vogue”  white walkers were trending on “Game Of Thrones” so I did it and it was a little bit of a life changing decision which genuinely got me out of my own skin! I was received at first by those who knew me with amazement and shock, then after the excitement was over the view was “actually that suits you Sir”, people genuinely loved it! It was such a unique look that it gave me something special. People couldn’t believe it was natural and still ask me if I dye either my hair or my beard, which I don’t – really, I don’t keep a beard groomer in my basement for daily root touch-ups! At first, I would try avoid that question emphatically until I couldn’t avoid it anymore and I faced up to the question and became unphased to address it comfortably in large groups of people! The more confident I was the more they bought in to my so- called new brand of sorts.

This question opened an important door for me and gave me the opportunity to explain myself, what my condition is all about and unapologetically give people a little insight into the unknown. Curiosity could be rationalised, and they responded with interest and tolerance, contrary to what I had always imagined. I no longer had to feel ashamed of my vitiligo, I now wear it confidently and proudly with a little grin which sits nestled in amongst the whitest beard you have ever seen.

Most of my life was spent on the run from myself, I look back and realize that the shame could have been avoided thinking the way I do now (clarity – the only true gift of ageing, oh! and also giving less of a ….). The media has highlighted vitiligo today where even fashion models now adorn the catwalk on full display with their beautiful patch-work kissed pelts in the flashing glitz. Guess what? recently I joined those ranks and featured in a couture shoot myself, a really cool brand designed with real freedom in mind. For someone like me it is the biggest gesture of throwing myself out there into the darkness or in my case “the sunlight” and going for it. To overcome my inner most fear and let the world really see me.

I have against all odds managed to create a beautiful life for myself, most unbelievably and importantly I have found the truest love, my supporting wife and our two beautiful children that are my everything.

I have succeeded at the life thing and you can do the same, if you just let go, be your authentic self, people will love and respond to you for who you are. Michael Jackson had vitiligo oh yes, my friends he wore gloves and made it iconic but actually was covering up, he used a procedure to accelerate his whitening and the facial surgery to accommodate his lighter complexion and we all thought he was a weirdo and maybe us thinking he was a weirdo made him into one? When your’e hiding, people know it and they feel it and it creates distrust and they will never be able to love or respect you without your honesty unless you love and respect you first.

I detained my body and my own mind living in doubt, limiting my own chances, fighting for my own limitations. I look back and I wish I handled things differently, but I do appreciate my own struggle because it molded my character which is mine and mine alone. I never would have dreamt I would ever jump into a cozie and hit the beach or be confident enough to model in a fashion shoot at 40 years old and be living my life shoulder to shoulder not on the outside looking in. I did this with a lifetime of barriers and boundaries behind me and a stigma that should have left me begging on the floor.

Wear your skin proud it’s only an accessory, our beauty is in our spirit!  

Pandas’ are now my spirit animal!

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Photographer Credit: Chris Love

About the Author

Shahn Mott

Shahn lives in Central Vietnam with his beautiful family where life is simple yet a static complicated daily adventure. He has always suffered with severe allergies to conformity based routine and skirts the edge of reality as a creative, entrepreneur/freelancer. He loves to spin everyday scenarios into a web of off-beat humour and on autopilot feeds his soul by adding an aesthetic layer to everything he can lay his hands on, from business to fun, the arts (all of them literally), style, food, fizz and of course the “word” written that is. Shahn hopes to continue living on a palate filled with many colours in his life with no day being quite the same making each sip an experience never to forget, being kind and breathing life in deeply.

Shahn lives in Central Vietnam with his beautiful family where life is simple yet a static complicated daily adventure. He has always suffered with severe allergies to conformity based routine and skirts the edge of reality as a creative, entrepreneur/freelancer. He loves to spin everyday scenarios into a web of off-beat humour and on autopilot feeds his soul by adding an aesthetic layer to everything he can lay his hands on, from business to fun, the arts (all of them literally), style, food, fizz and of course the “word” written that is. Shahn hopes to continue living on a palate filled with many colours in his life with no day being quite the same making each sip an experience never to forget, being kind and breathing life in deeply.