HOW SERIOUS IS VITILIGO?
Anyone who has no personal experience of it could be forgiven for asking the question "how serious is vitiligo anyway?" I understand why vitiligo (leukoderma) hasn’t received the same amount of attention, funding and research as other medical conditions and diseases. For one thing, too many sufferers are like me – reluctant to talk about it – and so general awareness of the condition has been poor. Also, it is not life-threatening, not physically debilitating, and not contagious. Understandably attention tends to be given to diseases like cancer, heart disease, etc. and to the difficulties faced by people with disabilities. I recently spent a summer caring for man who received horrific injuries in a car crash about 10 years ago and has been confined to a wheel chair ever since. He has the use of his right arm only. He also suffered brain damage which has left him with very severe speech difficulties and poor memory. He was a fit and talented man in the prime of life when he had his accident and still has a keen wit, wicked sense of humour, and fond but painful memories of an outstanding musical talent that he can no longer pursue. Not only that, but he has to undergo the daily indignity of being hoisted in and out of bed, on and off the toilet, etc by a succession of carers. Being one of them for a few months was, for me, a humbling and sobering experience and one that filled me with compassion for people who find themselves in his predicament and, to my shame, with gratitude that I am not unfortunate enough to be one of them.
... having vitiligo is not the cataclysmic calamity that a terminal cancer or severely disabling injury would be. But I do know that its effects on a person’s confidence and self-image can be quite devastating.
So I have no wish to overstate the plight of vitiligo sufferers or in any way dramatise or exaggerate the seriousness of the condition. But I do know, from my own experience, that the psychological impact of vitiligo is something that is very personal and is really not mitigated by making comparisons with other conditions or counting oneself lucky not to have cancer or be in a wheel chair instead. I know that some people with vitiligo claim (and I don’t doubt their honesty) to have come to terms with the condition and are not bothered by it at all. Sadly I have never been one of them and I suspect they are in the minority. Granted, having vitiligo is not the cataclysmic calamity that a terminal cancer or severely disabling injury would be. But I do know that its effects on a person’s confidence and self-image can be quite devastating. The unpredictable and progressive nature of the condition can cause an insidious erosion of one’s own sense of self. One day a familiar face looks back at you from the mirror and the next day you can see part of the picture fading and you know that in a few more days another piece of the jigsaw will have disappeared and a frightened, unfamiliar pair of eyes will be looking back at you from behind an altered facial landscape. A sudden change to the person you perceive yourself to be must be difficult enough to come to terms with. But an apparently random, mischievous, malevolent progressive alteration is unnerving at best and often panic inducing and deeply, deeply depressing. I suppose it has a lot to do with the fact that our skin is our outer packaging, our first impression to the world. Beauty is just skin deep, or so they say. It’s inextricably bound up with our own sense of identity, heredity, race and self-worth. And it’s not something that is supposed to change – apart from getting wrinkled with old age!
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