Vitiligo changed me

Last Updated on 14th September 2024 by Caroline Haye

Pigment and personality

From the moment we are born, life’s experiences start to mould us. We inherit certain character traits from our parents, of course. But, after that, external events and influences begin to have a cumulative effect on the people we become. We are not always conscious of this process at the time. In fact, it is easier to recognise after the event. For example, amid the countless happy and positive experiences that have made up my life to date, I now recognise – in hindsight – that one particular circumstance had a significantly negative impact on my development. A thing called vitiligo. From the first moment I became aware that my skin was randomly losing its natural colour, and that there was no cure, my world was shaken to its core… And my self confidence and optimism along with it. In short, having vitiligo changed me.

Pale smudges at the corners of my eyes

Not long ago I was sorting through some old family photographs and came across one of me as an infant. As far as anyone knew when the picture was taken, I was a totally healthy child and my skin was perfectly normal. I had seen the picture before in an old photo album but never previously noticed the faint, pale smudges at the outer corners of my eyes. They were so slight that they hardly showed at all. In fact, I’m not even certain if they were the first signs of vitiligo or not. But they probably were.

Either way, it can’t have been many months later that my mother noticed a small round white patch on my spine and another on my ankle bone. The rest, as they say, is history. The next patches appeared on one eyelid (bleaching the colour from several lashes), then the corners of my mouth. By the time I reached my twenties, there was no part of my anatomy that had not lost portions of its pigment. And there was no part of my personality and daily life either that had remained untouched by this process.

Unhappy in my own skin

To some people vitiligo is just a harmless skin condition. To others it is a hammer blow that alters everything… Their quality of life, their opportunities, their self esteem, their very personality. In my case, it stole my sense of security. If the way I looked from one day to the next could not be predicted, what possible certainly was there in life? And if my parents, my doctors, and my fervent prayers could not make things right, what hope was there that I would ever look and feel normal again? The world suddenly became a scary place where absolutely anything could happen. Without warning and without any solution.

From the moment I noticed my first vitiligo patch, I felt differently about myself. …. It altered my perspective. I lost my carefree attitude and became more guarded and introverted. In fact, it is probably no exaggeration to say that I became neurotic (at least inwardly, if not on the outside.)

I remember feeling like an outsider, an imposter, pretending to be normal and happy-go-lucky, when on the inside I was in a constant state of tension. A perpetual sense of dread of situations that might threaten to expose my vitiligo meant that I was never able to feel relaxed with myself. It was the very definition of being unhappy in my own skin.

Skin and identity

The colour and general appearance of a person’s skin is extremely important to their confidence and sense of self. Any visible difference can negatively impact an individual’s self assurance and even leave them feeling like they no longer recognise themself. Skin colour is so much an integral part of our identity that losing it, freckle by freckle, patch by patch, feels like gradually disappearing. Or worse… turning into an alien life form.

The reflection we see in the mirror is one that we expect to be much the same from one day to the next… Finding this not to be the case is deeply unsettling… To the point where it undermines your sense of security and creates a feeling of alienation from the rest of the human race, and even from the authentic person you thought you were.

An expert in vitiligo coping strategies

Like so many others in comparable situations, I developed various coping strategies. In fact, I became so expert at this that, after a while, I wasn’t even aware that this is what I was doing. It became second nature. And yet, it never became comfortable because I was not able to be myself. I wore make-up and clothing that masked my white lesions. I limited my work and social activities to those that would not reveal my patchy skin. And, in doing so, I lost my spontaneity and much of my zest for life.

The saying goes, “You don’t know what you’ve got till its gone”. But sometimes, you don’t know what you had till you lose it and then get it back again… Like I did with my pigment – and my personality.

As my skin recovered, so did my mind

The little girl in that photograph was happy in her own skin and remained that way for such a short time. By the time vitiligo had modified her behaviour and personality, she hardly remembered what it felt like to be truly comfortable with herself and her place in the world. It was not until her lost pigment began to return that she reconnected with that blissful state of normality.

Once I knew that I was going to get my skin colour back it was as if a massive weight had been lifted. Even before the re-pigmentation process was complete I began to feel like the person I had forgotten I was… if that makes sense!

I think this just goes to show how powerful an emotion hope is. Even before all my lost pigment had returned, hope released the strangle hold that vitiligo had held on my mind, my outlook on life – in fact, on my personality as a whole.

Vitiligo changed me, then changed me back… better than before

Although having vitiligo had a profoundly negative effect on my psyche for much of my life, recovering from it (or, more accurately, reversing and maintaining that reversal) has had a more positive effect than I could ever have imagined.

I like to think the whole experience has made me wiser, more understanding of others’ struggles in life and more compassionate as a result. It has certainly taught me that health, self-confidence, feeling “normal” and comfortable in one’s own skin and being able to express one’s own unique personality are not things to take for granted. I am definitely a more grateful person than I would have been if I had not learned this the hard way. So, I can honestly say that my vitiligo story has had a happy ending. And, whilst the journey was a bumpy one in many ways, I feel that it has brought me to a far better place than I would ever have found without it.

Note: the feelings and experiences I have described on this page are personal to me. They are not intended to represent anyone else’s vitiligo experience or to be any kind of example of how someone with vitiligo should or shouldn’t react to having it. I have simply shared my own experiences and hope that readers will find something helpful to take away from reading about them.