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30/06/2018 07:35 SAST | Updated 30/06/2018 07:35 SAST

Finding Peace In The Dappled Spaces: My Experiences With Vitiligo

'Did my response to my vitiligo indicate a failing of character?'

vijaya_5712 via Getty Images

Vitiligo is a strange medical condition to live with. It is an everything and a nothing, all at once. Let me explain.

I learned that I had vitiligo when I was fifteen. I was at the dermatologist for an unrelated skin condition, and took the chance to point out two small white patches that had shown up on my skin. At that stage, they were innocuous, no bigger than ten-cent coins. No pain, no discomfort, just patches of skin that looked different. Even so, following my dermatologist's utterance of the word "vitiligo" to me, my life — and my very conception of my identity — was set upon a very different path to what I had imagined.

My dermatologist told me that, over time, my skin would slowly lose its colour, turning from brown to — as she described it — "ice white". Vitiligo is an autoimmune disease, she explained. My immune system attacks my own, healthy melanocytes, effectively "switching off" the cells that give my skin its colour. There is no predicting how fast or how extensively it will spread. There are treatments, with varying levels of success. There is no cure.

As an already-anxious teenager, I was thrust headlong into overwhelming doubt. How fast would the vitiligo progress? Would anyone ever find me attractive? What would I look like in five, ten, fifteen, fifty years? Would it still be me? Would I be able to recognise myself in a reflection that was more than just imperfect, but was marred by some inherent fault within my cells?

In that sense, the diagnosis was an everything.

The white patches started showing up in my face. My maths teacher noticed, and asked me about it. I told her what it was, perhaps with some expectation that she would sympathise with me, that she would recognise the turmoil that I was experiencing and offer some solace. Her response is fixed in my memory.

"So?"

I thought she missed what I had said. I told her again.

And again, she said, "So?"

The question mark is important: it conveys the upward lift in her tone of voice. That tone was as good as a foreign language. What had escaped my understanding then was that she could ask that question in that way because her sense of the world as an adult was vastly different to mine. At the same time, her one-word response was a question and a challenge.

This is the tension of having vitiligo. It is the ache of vacillating between everything and nothing. A question that plagued me was whether wanting to treat my vitiligo was a sign of vanity.

With that one syllable, I was introduced to the idea that having vitiligo is a nothing.

Vitiligo is a nothing in that it does not affect my health in any material way. It does not hurt. It is not contagious. It does not shorten my lifespan. It does not hinder me from moving, talking, breathing, or existing in any outwardly cognisable way different to what I would have done had my skin been evenly coloured.

This is the tension of having vitiligo. It is the ache of vacillating between everything and nothing. A question that plagued me was whether wanting to treat my vitiligo was a sign of vanity. As a teenager, I would attend a local dermatology centre to have UVB treatments using psoralen creams. While there, I would see patients with skin cancer go in and out of treatment rooms where they would receive light treatment known as PUVA.

This treatment was painful and would cause them distress, so much so that I remember hearing the haunting sound of moans of discomfort as I sat in the waiting room. And there I was, subjecting my skin to an excess of UV radiation, at my parents' cost. To what end? Was I looking for normalcy? Beauty? Was wanting either of these acceptable?

And then, the question that cut even deeper: was I even more greatly flawed beyond some errantly behaving melanocytes? Did my response to my vitiligo indicate a failing of character? I could not shake the nagging feeling that in wishing my vitiligo away, I was showing myself up as being unwilling or able to do the mental work to accept myself as I am. We are told that doing so is the key to happiness. The flipside of this and the message I heard is that not being fully realised and at peace with one's self was yet another fault.

Years of living with vitiligo have brought no great resolution to these questions, no ah-ha! moment where everything is made clear. I am almost thirty now, fifteen years away from the girl in the dermatologist's office. I am also probably around fifteen years away from the age of my maths teacher when she asked me that very simple and yet incredibly complex question.

I can appreciate that my teenage self's fears did, in a sense, become realised. I do look very different to what I expected or wanted. My morning routine is longer for having to apply a mix of primer, cover-up make-ups, powders, and fixing spray — and yet it all rubs off during the day anyway. Having vitiligo has affected the way that I interact with the world, perhaps in ways that even I haven't realised fully.

The task set for me is much the same for any person trying to make sense of the vagaries of life: to one day find a measure of peace between the outer shell and inner essence.

But also, I can appreciate what my teacher meant by her question. So what? Having vitiligo did not prevent me from achieving many goals I set for myself: it did not stop me from qualifying as a lawyer, from completing postgraduate degrees in my home country and abroad, from learning to bake bread and to paint landscapes. Nor did it stop me from finding an adoring partner who thinks I'm lovely, with or without the cover-up.

For now, I have made myself comfortable with not being able to reconcile the two extremes of everything and nothing. It is far more honest — and healthy — to acknowledge the difficulties rather than forcing some kind of acceptance that I know I'm not ready for yet.

I am content to know that vitiligo has shaped me, but it does not define my identity. My life has been different from what I expected, but it is not diminished. The task set for me is much the same for any person trying to make sense of the vagaries of life: to one day find a measure of peace between the outer shell and inner essence.

But as I've learnt over this long journey, it's okay if it's not today.