50 years spent thinking about my patchy skin
Not everyone with vitiligo allows it to dominate their thoughts. I admire those individuals who are able to put their white patches into healthy perspective and simply get on with their lives. However, I can’t begin to estimate how much time I have spent over the years thinking about my patchy skin – and that in spite of being a pretty positive person by nature. It must be hundreds of thousands of hours in total. But the ways in which I have thought about it have changed many times during the last 5 decades, sometimes subtly and sometimes dramatically.
I find it strange to think that there must have been a moment when, as a young child, I first noticed a small white patch on my left ankle and wondered what it was. It was probably no more than a fleeting and idle thought at that point. I certainly don’t remember actively worrying about my skin until I was about 7 years old. It was around this age that I lost the pigment on my right eyelid, causing it to look pink, and developed several white lashes. This was when I first started to feel self-conscious about my appearance and my anxiety only intensified when a trip to the doctor’s surgery left me believing that there was nothing that could be done about this thing called vitiligo and that it would probably just get worse. (“But, never mind – at least it’s not life-threatening!”) Of course, my doctor was right about my vitiligo getting worse but it was to be many decades later that I would discover, by sheer fluke, that he was wrong in his opinion that nothing can be done to improve the condition.
So, as I reached my teens – a stage of life fraught with insecurities in the best of circumstances – I began to obsess over each new patch of white skin and to live in dread of where and when the next one would emerge. There were times, of course, when I would be able to forget about the whole thing. These were liberating times when I could convince myself that I was just the same as all my friends and could enjoy life in the same way as them. But, inevitably, something would always happen (an innocently curious comment or a deliberately unkind remark about my blotchy hands or my panda eyes) to remind me that my identity was gradually being stolen by an unseen and malevolent force. My attention then turned increasingly to strategies for concealing the patches and avoiding situations that might draw attention to my blotchy and unpredictable skin colour. I could actually feel myself losing my spontaneity and my sense of being part of the human race. I literally lost the ability to feel comfortable in my own skin.
During my 20’s and 30’s my pigment loss accelerated and this fact haunted me. I tried to push it to the back of my mind while I lived my busy life but it was always there, lurking like some evil ghost just outside my field of vision, and whenever I looked in the mirror there it was . Anyone who has been through this process will recognise the pattern of self-pity, anger, denial, hope, despair and even bargaining with God if he will just make the white patches go away. My vitiligo was often the last think I thought about at night and the first thought to enter my mind on waking. I can remember several occasions when I dreamt vividly that I had been cured, only to wake up to reality with the sinking feeling of a condemned convict. Happily, I was never suicidal – I hasten to add that, as far as I know, most vitiligo sufferers never contemplate such drastic action. Sadly some do and no amount of common-sense reasoning to the effect that worse things happen at sea (not to mention on cancer wards) will necessarily change their state of mind. One recurring thought that kept me from the worst extremes of depression was that there was no sense in asking the question “why me?” because the inevitable answer would be “why not me?”
By the time I reached my 40’s I had gained a degree of acceptance. For one thing, I no longer suffered from the teen / 20-something’s preoccupation with looking perfect and, for another, I had more or less come to terms with the probability that there would never be a cure for vitiligo in my lifetime so I might as well stop railing against something that simply cannot be helped. It’s not that I stopped thinking about it – more that I was able to think about it with less emotion and more detachment. So it almost felt like a fitting reward for making my peace with vitiligo when unexpectedly, at the age of 50, I found a treatment that actually started to revive my lost pigment and which has restored nearly all my original colour (roughly 80% of which had disappeared over the years).
Four years on (and still improving), I am finally at a stage in my life when I could so easily forget that I ever had vitiligo. Except for some remaining mottling on hands and feet and a slightly more freckled appearance than I had as a child on all of the areas that have re-pigmented, the effect when I look in the mirror today is of a face and body that are all one colour again (literally my dream come true). And so now my way of thinking about vitiligo has changed again. It still occupies my thoughts – probably more than it did five years ago - but now the reason I think about it so much is altogether more positive. I think about it because I want to, because it interests me and because I want to tell others that they have good reason to be hopeful. I spend a lot of my time nowadays researching the subject (which I find fascinating), writing my blog and corresponding with other vitiligo friends.
So, if you have vitiligo and find it occupying your thoughts more than you would like, I will give you the advice that I would give to my younger self (if I just had a time machine!): “thinking about it is fine, even a bit of self-pity is fine, but despair is not. The doctors who tell you to go away and live with it because nothing can be done are wrong. Use your thinking time to plan, research and be proactive about finding the best treatment for you.” If I had had the benefit of that advice when I was younger, maybe I would have been more proactive about finding an effective protocol and enjoying the benefits of my re-pigmentation sooner.
My name is Caroline.