Last Updated on 17th May 2021 by Caroline Haye
How much time do you spend doing this?
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 is in spite of being a pretty positive person by nature. Thinking about your vitiligo can become an obsession if you let it.
Vitiligo occupied my thoughts for so many years that it’s hard to remember a time before that. There must have been a moment when, as a young child, I noticed my first lesion… A small white patch on my left ankle. And I must have wondered what it was. But I have no clear memory of that moment. It was probably just a fleeting and idle thought.
The first time I noticed a white patch
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, soon after, several white lashes appeared. This was when I first started to feel self-conscious about my appearance. And my anxiety increased with my first visit to the doctor. I left the surgery in no doubt that there was nothing that could be done. I had something called vitiligo and it would only get worse. (“But, never mind – at least it’s not life-threatening!”) Of course, my doctor was right about my vitiligo getting worse. But at least events proved him wrong in his opinion that nothing could be done to improve my condition.
As I reached my teens I began to obsess over each new patch of white skin. I lived in dread of where and when the next one would emerge. There were times, of course, when I would forget all about it. These were liberating times when I could convince myself that I was just the same as all my friends. I told myself I 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.) Something would always remind me that my identity was gradually being stolen by an unseen and malevolent force.
I tried to push it to the back of my mind
My attention then turned increasingly to strategies for concealing the patches and avoiding situations that might draw attention to my blotchy and unstable 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. A cycle of self-pity, anger, denial, hope, despair and even bargaining with God. “I’ll do anything if you will just make the white patches go away.” My vitiligo was often the last thing I thought about at night… And my first thought on waking.
I even dreamt about my vitiligo
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. As far as I know, most vitiligo sufferers never contemplate such drastic action. Sadly, though, some do. And no amount of reasoning to the effect that worse things can happen in life 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. It was 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 therapy that actually started to reverse my pigment loss… A process that has restored nearly all my original colour (roughly 80% of which had disappeared over the years).
My preoccupation with vitiligo now is a positive one
Another decade on and my skin is 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 more freckles than I had previously, my skin is back to normal. And when I look in the mirror today I see 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 this 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. Be determined to find the best treatment for you.” If I had had the benefit of that advice when I was younger, maybe I would have been quicker to find an effective therapy. And I could have enjoyed the benefits of my re-pigmentation sooner.
