Why vitiligo is not “just another skin condition”

Last Updated on 30th March 2023 by Caroline Haye

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Skin colour and identity

I’m sure I am not the only person to have occasionally pondered the question “who am I?” We all know we have a physical body but we also know there is more to us than that. So what is it that makes me uniquely me? Wow – this is a bit heavy for a vitiligo blog, right? Yes, it is. Don’t worry, though. I’m not going to attempt to answer the lofty questions that have occupied philosophers down the ages! But I do want to touch on the part that our skin plays in our sense of identity. Because vitiligo is not just another skin condition. And its effects are not just skin deep.

​Perception is everything

I don’t know who coined the phrase “perception is everything” but – even if it is not quite everything – it certainly accounts for a lot. After all, we base how we respond to others largely on what we see with our eyes, as well as the non-verbal cues we pick up on from them. Most of what we see when we look at another human being (apart from their hair, or lack of it, and their clothes of course) is their skin. We don’t see their heart or their kidneys or their bones. We see their outer wrapping, their epidermis. Maybe that is why we care so much about what our skin looks like and maybe that is why so many prejudices, past and present, are based on the colour of people’s skin.

No matter how many times we may hear the advice that we should never judge a book by its cover, we still do. We judge others by how their skin looks (black, white, brown, freckled scarred, blemished or multi-toned) and we also respond emotionally to what we see when we look in the mirror. And how we feel about what we see affects the signals we send to others. If we are not happy in our own skin, then other people sense this and it adds to whatever perception they already have from looking at us.

Who do you think you are?

Not only is the colour and health of our skin influential in how others perceive us and how we feel about ourselves but it is also fundamental to who we believe we are. Our skin, like our hair and eye colour, is determined by our heredity. It is a highly visible proof of our genetic roots. Skin tone is one of the things that reminds us of where we came from and the family background we share with those we love. It can also be a reminder of shared culture and heritage.

More than that, it is the part of us that we see every day of our lives and which ought not to change (beyond the fact that it may wrinkle with age or tan in the sun). So, when this supremely significant aspect of our appearance and identity suddenly alters for no apparent reason and begins to change from its uniform tone to a patchwork of colour and pure white, the sense of loss of self can be utterly overwhelming.

Vitiligo is not like other skin conditions

Why am I making this point in a vitiligo blog? Surely I am preaching to the converted. Well yes, I probably am. If you have vitiligo you know exactly what I am talking about. But maybe you are feeling as if no one understands what you are going through. Maybe you care about someone who has vitiligo and want a deeper understanding of its psychological effects. Or maybe you are a health professional who has stumbled across this page, in which case I hope it gives you an insight into why vitiligo is not just another skin condition.

I am not minimising the distress that can result from other dermatological disorders – unsightly or itchy rashes, sores or dry skin. What I am saying is that vitiligo is different. It is a condition that can strike at the very core of who we feel ourselves to be. It can leave us reeling, wondering what unexplained and unexpected change in our fundamental appearance is going to occur next? Are we suddenly going to sprout an extra limb or a third ear or will we, like the hero of Kafka’s The Metamorphosis, wake up one morning to find we have turned into a beetle?  

The sense of bewilderment and isolation, and even shame, that the onset and spread of vitiligo can have on sufferers should never be underestimated and needs to be better understood by the medical profession. Until it is, patients will continue to receive inadequate support from health professionals, the condition will continue to be viewed as a harmless by doctors, less worthy of research and funding than other skin disorders and under-publicised and misunderstood by society at large.

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