Everyone with vitiligo has a different story to tell

Last Updated on 19th November 2019 by Caroline Haye

One skin condition: different reactions

I have been trawling the internet over the past few weeks for other vitiligo blogs and success stories.  I have found a lot of personal accounts, rather fewer success stories and, along the way, I have come across some very sad tales too.  I have been moved, inspired, challenged and reduced to tears by many of these accounts and would like to mention just a couple of them to illustrate how everyone with vitiligo has a different story to tell about what it is like to live with this depigmenting skin condition. 

I’m glad to say that the vitiligo forums like Vitiligo Friends, Vitiligo Support International, Daily Strength and Patient.co.uk (not to mention all the social media channels for vitiligo) are full of personal accounts from ordinary people around the world who have vitiligo and who cope, to a greater or lesser degree, with its everyday consequences. (So, if you ever feel isolated by your condition, as I did myself, I highly recommend visiting these sites where you will come across others who are happy to share their experiences and swap tips, photos and encouragement.  Connecting with others who understand what you are going through can minimise the psychological effects of vitiligo. It really can make all the difference in the world.)  

But then there are some #vitiligostories that stand out from the rest – not because of the type or extent of the vitiligo involved in each case, but because of the way in which the individual sufferer has responded to their situation.

At one end of the spectrum is the inspiring, almost fairy-tale story of Winnie Harlow, the former America’s Next Top Model contestant, whose real name is Chantelle Brown-Young.  Diagnosed with vitiligo around the age of four and bullied at school for her two-tone skin, she went on to become an iconic fashion model at the tender age of 19 and a confident and compassionate advocate for vitiligo sufferers everywhere.  (Read more about her here.)

At the other end of the spectrum is David’s heart-breaking story as told by his family on the American Vitiligo Foundation website. Tragically, David, a bright, 25 year old collage graduate from New York, evidently found his vitiligo too much to bear and was so distressed that he took his own life less than a year after being diagnosed.

Judging from the photos of David, he was a really good-looking guy and maybe that just made the difficulties of living with a progressively “disfiguring” condition even more unbearable.  On the other hand, Winnie Harlow is an exceptionally good-looking girl and yet, her response to the patchy loss of her lovely brown pigment has been to face it head-on and turn it into an asset and a public symbol of tolerance and unconditional love.

This goes to show that the ability to adopt a positive mind-set in the face of considerable adversity varies hugely from one person to the next.  I suspect too that, it may go to show how much more support and encouragement is available via modern media now than there was when David died just a few short years ago in 2008.  Who knows if he would have felt as helpless and hopeless now that there is a greater awareness of vitiligo and a whole online support network as he obviously did back then?  My heart goes out to his family and to all those who have ever contemplated suicide because of their vitiligo.

I have always thought that the cliché “What doesn’t kill you makes you stronger” was just one of those glib expressions that people use in order to sound profound. But it seems to me that a truer word has never been spoken when it comes to living with vitiligo. The doctors are fond of telling us that it isn’t life-threatening.  But for David, it was – and sadly, for many others struggling with depression and isolation as a result of their pigment loss, it is highly dangerous. But the other side of the coin is that facing what, for many people, is their worst nightmare – losing their looks, their identity, their confidence, their social standing and, in some cases, even their ethnicity – and coming out the other side does indeed make them stronger.  It makes them more courageous, more positive, more appreciative, more tolerant and more compassionate. In my experience, vitiligo sufferers are among the most generous-hearted people on the planet and often, like Winnie Harlow, they demonstrate wisdom well beyond their years.