Why I’ll never get a tattoo. And only wear shorts on “angry” days.
Inside the mind of someone with vitiligo.
As some of you might be aware by now, some people in the world have vitiligo.
Vitiligo is a long-term skin condition. It is generally understood to be caused by an auto-immune disorder: the body sees pigment-causing skin cells known as melanocytes as toxins and seeks to destroy them. The main symptom is the loss of skin pigment that appears as white patches on the skin. These white patches are almost certainly permanent, will never tan and offer next to no protection from the sun, thereby increasing the individual’s chances of skin cancer.
As someone who has had vitiligo since the age of 8, and whose body has since been steadily losing colour to it, seeing vitiligo become more and more visible in the media as of late (see BuzzFeed’s “17 absolutely stunning people living vitiligo” and “BBC Radio 1 Stories: My Extraordinary Skin”, as well as any article on model Winnie Harlow) has been somewhat of a comfort. I was told by the doctors that 1 in 100 people have vitiligo yet I always seemed to be the only person in the room (school, neighbourhood…) that had it, and until recently it seemed vitiligo was only spoken about in medical journals, group support sites, or magazine articles on Michael Jackson.
Naturally the media, and the comments from the public that inevitably follow, has mainly focused on the appearance of vitiligo, drawing both negative and positive reactions. However, having vitiligo is not just a physical thing. It does strange things to your mind too, making you think things that people without vitiligo have probably never thought about and never will. Here I want to share some of the sad, weird and pretty messed up thoughts inside the mind of a person with vitiligo:
1. I think the patches make my skin look messy or dirty. I feel clean straight after showering, but as I dry off the water with a towel to reveal my unmistakably white patches I instantly feel unclean again. It’s also the reason why I’m put off getting tattoos; I think they will add to the “mess” on my skin.
2. When I look at the patches it’s like I am seeing through those parts of my body, as if nothing is there. Each patch represents a part of my body, not just skin, that has died off. When I look at my legs I see separate parts of a leg, with the oval shaped patches on my knees breaking up my calves and thighs, which seem to be floating on top.
3. Having vitiligo leads to a more intense experience of a particular characteristic of skin — as a biological thing that is outside of your control. The conviction that skin colour should not define a person takes on a whole new meaning. You can’t let your skin define you when it’s constantly changing even when you’re not (at least not as fast), or changing in a way that you really don’t like (I was not ready when my forearms started turning white).
4. In the past, I have had the fear that my partner will leave me for a “single coloured” person, that is someone whose body is just one colour.
5. When I see other people with patches I feel the desire to go over and say “Hey brother/sister, me too” and pull up my sleeve to show them the patches on my arm. As an act of solidarity. But I never do it.
6. The symmetrical patches and neatly shaped patches are the worst. The neatness of them makes them look almost ridiculous. I prefer the ones which have ragged edges or spots of natural skin dotted about in the middle. In some weird way, I think this reflects my fashion style. I also like to look a little rough around the edges.
7. Since first discovering it, I’ve gone through hundreds of hypothetical situations in my head where I have to choose between having vitiligo and having something else instead. In a way, it’s a coping mechanism. If I compare a worse option with vitiligo, then having vitiligo doesn’t seem all that bad.
8. When I’m feeling super bold or just downright angry at the world, I will wear something that will show the public the patches that I hide/hate the most, like the ones on my knees. I feel like displaying these patches offends people — they feel disgusted or uncomfortable looking at it — and in these moments I want to cause offense to random members of the public.
9. When I dream (those dreams that you have to start yourself when you just get into bed) I debate in my head whether I am going to picture myself with vitiligo or being single coloured.
10. Seeing a single coloured body has always produced within me a sense of wonder and lust. Laying on the beach in the summer (under the safe shade of the parasol) I would check out men and women alike, not for their body shapes but for their impossibly shimmery, evenly tanned skin. I have daydreamed what it would be like to run after a ball on the beach without the feeling that I might collapse under the embarrassment of my patchy skin. As more white patches appear and old ones spread, I am slowly coming to terms with the permanency of them. Now single coloured bodies are starting to look more alien to me, and in a small way grotesque. The possibility of being one colour is now so far removed, so ludicrous, that to see a “normal” pair of legs can be an intensely emotional and multifaceted experience.
11. Still, I sometimes imagine that it’s all a big hoax and that I can peel the patches off as easily as those sticky clay face masks.
So that’s it. The list is definitely not exhaustive but I’ll keep it short for now.
This post is not a call for sympathy. It is also not a dismissal of the laudable work by those who are helping to make people with vitiligo feel confident in their skin. It’s an insight into the mind of someone who on the surface (at least when they are fully clothed) looks the same as you, but on the inside is thinking and feeling something very different.
