Living with vitiligo


Most people I’ve met in my life probably don’t even notice that I have vitiligo. And for that, I am eternally grateful for my super pale complexion (something I spend most of my life hating, but I can’t deny this huge personal benefit).

Vitiligo? What even is that, you say. It’s some skin condition where you lack pigment in your skin, making some of it appear white, leaving you patchy in most cases. No one knows why people get it, although it seems to be agreed amongst medical professionals that it is linked to auto-immune disease. Meaning when you have it they like to stick you with needles and check you don’t have diabetes or an abnormal thyroid every so often. Good job I’m not scared of needles eh.
It is thought to affect 1 in 100 people, although some of those will be affected so minutely they may not even notice. It varies on how much of your body is affected, again seemingly randomly from person to person.
It also varies completely what age it affects people. Personally I was diagnosed age 4-5 (can’t really remember) and at that young age I didn’t really register what was going on. By the time I was midway through primary school I had no pigment in my feet and ankles, and none on my shins and front of knees. Vitiligo can have a symmetrical effect you see. (I actually thought it always did, until I heard about the model who appeared on America’s Next Top Model who has it, and everyone was amazed at the fact hers was quite symmetrical) And you know what children are like, no filter and constantly curious. This is when I think my self esteem actually suffered the most, as a child. The school summer dresses we had to wear meant they were constantly on show, and children, particularly boys in my case, can be mean. So when I went to high school I tried camouflage make up. That didn’t work out, I’m just too pale for the shades on offer, and it was thick and time consuming to apply. It wasn’t for me. Of course the reason it’s so time consuming for me is that the patches cover some 60% of my body, an unusually high percentage. It’s not even patches to be honest, from my upper thigh onwards I have no pigment, except for the outside of my arms (handy), a big patch on my lower back, and two weird triangle patches on my chest. Some has also started to reappear on my stomach too, which I think happened after I got sunburnt in falaraki 2 years ago.

I gather that this isn’t supposed to happen, according to the NHS website you shouldn’t use sun beds if you have a ‘condition affected by light’ and lists vitiligo under this category. And although it usually involves sunburn, I have found sun usually helps and restores pigment. The patches on my knees for example are not solid white as they used to be, but mottled with skin coloured patches. Which I prefer. Furthermore the two triangular patches on my chest weren’t even there until I got sunburnt on holiday as an 18 year old. I know UV light can be used as a treatment, and I am seriously considering using a subbed just to see what the effect would be. If anybody else has seen a similar effect from sun exposure I’d be interested to know.

The main reason I thought I’d share this post with you, internet, is the fact that many websites with information on vitiligo have a horrible habit of referring to it as ‘an incurable disease’… Makes it sound a bit like having rabies or something. Technically it might be a disease, I don’t know I’m not a dermatologist, however I like to think of it as a condition. Diseases sound nasty and deadly, something to be scared of. Vitiligo isn’t going to kill you, it’s just a bit of pigmentation loss. And it sucks, but it’s certainly not the worst thing that could happen. And while it is frustrating that they don’t know what causes it, meaning that coming up with a cure is highly unlikely for now, it is liveable with.

The measures I have taken to deal with it are that I always wear foundation when I leave the house, the only exception being going to the gym. Because what’s the point in that. Years ago I wouldn’t have, but now my confidence is at a level where I just don’t care. Most people I know don’t notice I have it. I don’t get stared at weirdly when I wear bare legs on a night out, and the most common thing people ask is ‘is your fake tan coming off’ when people notice. Hardly a mean thing to say, it does look odd I suppose when you aren’t used to it. And my teenage worry that guys wouldn’t want to go near me was utterly ridiculous, most of them don’t notice either, or it takes them a good few months to notice. Or maybe just to feel like they can say anything ha.
One of them even answered the ‘are you wearing dodgy fake tan?’ Question for me, which was nice of him. Saying that he did also say I didn’t have the right to call anyone with tattoos multicoloured because I had actual multicoloured skin. Which was kind of mean. (He did apologise, and it is the only derogatory comment someone has made about it since high school that I can recall). Another guy actually thought it was cool. So there you have it.

I have seen some incredible photos online of people who have covered up all their affected areas of skin with tattoos. For me to do this would be crazy expensive, so not really an option, but I would definitely recommend it as a quicker solution to small patches on arms or legs or the torso/back area, great excuse to finally do it, and much less maintenance than camo cream.
I have several tattoos across my back and sides. I’d always wanted tattoos anyway, but the way I see it, the difference between pale skin and black ink is much more stark than faint pigment patches, so if someone is staring at my skin it’s far more likely to me that they have seen a tattoo and are looking at that. Which is exactly what I will be saying to my parents when they eventually notice that my claim of having one tattoo is about 5 too short (maybe more if I ever manage to save some money).

It also affects my hair very slightly, and I occasionally get these silvery white hairs. Not many though, and since I have been consistently dying my hair since the age of 14, this hasn’t really presented much of an issue for me.

So there you have it. My personal experience with vitiligo seems to sum up to that it is not the end of the world. There are ways to cover it up if you want, or ways to distract people and stop them even looking at your skin. Own it and be fabulous.

Categories: DermatologyTags: , , , , , , ,

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