As summer approaches, the prospect of those lazy, hazy days ahead can be daunting – even deeply depressing – for anyone with vitiligo. The fact that the rest of the world is eagerly anticipating the pleasures and sense of freedom that come from spending time outdoors, in the garden or on the beach, enjoying sunny barbecues with friends and sporting the latest skimpy summer fashions just makes matters worse.
I honestly don’t believe that vitiligo sufferers are any more given to self-pity or paranoia than the rest of the population but it would be a heroic individual indeed who didn’t occasionally feel a twinge of envy at all those evenly-tanned bodies whose owners seem oblivious to their good fortune in having a healthy share of pigment. And it does take a great deal of self-control not to sometimes wonder why God singled you out to be the one person in a hundred who shuns the sun and reaches for more clothes and more makeup the hotter the weather becomes when all you really want to do – more than anything else in the world – is put on a swim suit and lie by the pool with everyone else.
Some brave souls now do what I never did in all the years I had vitiligo: they “come out”. Partly, I believe, thanks to the social media - which provides an opportunity for mutual support and safety in numbers – many people with vitiligo now feel that it is simpler, more honest and more likely to gain much-needed public awareness of the condition to bare their white patches for the entire world to see. I admire these people more than I can say. But I know – from many years of personal experience - that not everyone feels able to come out of the “vitiligo closet” and, for those people, a valuable part of their coping strategy is to cover up and avoid the curious glances and inevitable questions that are the lot of the vitiligo sufferer.
One way of doing this is to use a self-tan on the white patches to lessen the contrast with the surrounding skin or even camouflage the vitiligo completely. How successful this can be depends on the individual’s natural skin tone and the particular product they choose. I applied my first ever self-tan decades before the concept became a commercial reality. I was only about 7 years old when I came up with the idea of using cold teabags to stain my white skin to the same colour as the rest of me. The trick was, of course, to brew the teabags (and drink the tea by all means!) and let the bags cool before squeezing them to remove some of the excess moisture and then dabbing the residue onto the skin. Once dry, the stain was quite effective but had two major drawbacks: the tan washed off as soon as it came into contact with water and the treated skin smelled strongly of English Breakfast, Darjeeling, Earl Grey or whatever the infusion of the day had been!
Of course, once proper self-tans hit the high street I thought I’d died and gone to heaven. They were a life-saver during the summer months; without them, I think I would have become a hermit. My favourite was St Tropez because it had a colour guide which made it easier to apply to the white patches without streaking or straying too badly onto the surrounding, pigmented skin. Also, it was less orange and a little less stinky than most other self-tans on the market… and it lasted a few days longer than the teabags!
However, as I learned more about the underlying causes of depigmentation I came to realise that repeatedly applying products which contain numerous synthetic chemicals was only likely to make matters worse by increasing the already elevated levels of hydrogen peroxide on my skin and increasing the oxidative stress that researchers now know contributes to the development of vitiligo. Happily, I have almost fully re-pigmented over the past 4 years, thanks to a nutritional treatment that I accidentally found worked for me, but I still have some mottled white areas on my hands and feet which I prefer to camouflage during the summer. Since I have turned my back on the chemical-based self-tans, I once again decided to improvise with something natural, but this time I chose something that would last a few days longer than tea and that doesn’t create a craving for scones and cream every time you smell it: henna. It has been used as a natural hair dye and for decorative tattoos for centuries, so why shouldn’t it work as a self-tan too? Well, it does and I’ll explain how to go about applying it in part 2 of this blog post. :)
A big thank you to the owner of this beautiful cat for posting a photo on the internet. She (or he?) has vitiligo and is obviously not bothered in the least about it!
Seeing this picture made me realise that we can learn a lot from animals and I wrote this daft poem based on the conversation I might have had (before I recovered from my vitiligo) with this fabulous feline...
“How are you feeling, kitty?
You’re looking very pretty.”
“I’m feeling pretty… Purrrr!
because I love my furrrr.”
“Where did you get those speckles?”
“I got them from my freckles!
Because my skin has patches
I have a coat that matches!”
“How strange that you should be
in the same boat as me!
I too have vitiligo,
not that you would think so.
You see I always hide it
(because I can’t abide it)
with makeup and with clothing
and live in fear and loathing.
I wish I could begin
to love the skin I’m in
instead of being weak
and feeling like a freak.
But since cats are so wise
it comes as no surprise
that you should somehow relish
what I perceive as hellish.
You wear your spots with pride
and never try to hide.
You see it as your duty
to flaunt your feline beauty.
Please, kitty, do be nice
and give me some advice.
I’m sure that if you do
I’ll learn a thing or two.”
Instead of saying more
I hold my breath in awe
as she looks me in the eye
and purrs her short reply.
“If you’re feeling sad
And your blotches make you mad
I have a cure for that...
Imagine you’re a cat!”
Conversation with a vitiligo cat © April 2014 Vitiligo Protocol
It can be. If you doubt this, then take a look at the photos on #SteveHargadon’s wonderful Uniquely Beautiful photo site and you will see what I mean. The many and varied patterns of vitiligo in these pictures seem to turn the faces and bodies into living works of art. Far from spoiling their natural beauty, the markings heighten it somehow and, as I look into their eyes, I find myself captivated by the strength and dignity that emanates from them.
Having communicated online with many vitiligo friends over recent years, I have also found - in the vast majority of cases - what I can only describe as a spiritual beauty which sets them apart from the average person. I’ve often asked myself why this should be. I think the answer lies in the fact that many of us who have been through the process of seeing ourselves change in appearance from one day to the next have had to find a way to come to terms with who we really are. We have realised from personal experience that physical appearance has nothing whatever to do with who a person is on the inside and what makes them special. This realisation causes us to look beyond the superficial in ourselves and in others and I believe it makes us more tolerant, more compassionate and – dare I say – altogether wiser than we might otherwise have been.
So, does this mean that people who have vitiligo are more beautiful than they would be if they didn’t have it? Well, this probably depends on how they react to their condition. Not everyone finds wisdom and compassion as a result of their own suffering. Some people can’t cope with the psychological effects of seeing their appearance change and dealing with the ignorance, curiosity, or even cruelty, of others. These individuals may become bitter, withdrawn, angry and resentful - reactions that rob a person of their natural beauty faster than any number of white patches ever could.
I certainly don’t blame those people who cannot find the beauty in their own appearance or in their soul. No one knows what someone with what they see as a disfiguring skin condition goes through or how deeply the experience affects them unless they have been through the same experience themselves. I had very widespread vitiligo for almost 50 years before I unexpectedly found a treatment that caused me to regain my natural colour. I believe it made me a stronger and more thoughtful person and it definitely made me a more compassionate and empathetic one. But, try as I might, I never did manage to see my white patches as beautiful. I’m not proud of this – it’s just a fact. So I was thrilled, relieved, grateful and humbled when my pigment returned. I felt that it gave me back whatever physical beauty I had been missing. But I like to think that, even though my white patches disappeared, the beauty that vitiligo imprinted on my soul has remained and that is a gift I truly appreciate. :)
It was about this time 4 years ago that I first tried a particular couple of #nutritionalsupplements in the not-very-confident hope that they might help my #vitiligo – even though nothing else in 50 years ever had helped. I came across them in the product range of one of the suppliers I was using at the time for my work as an image consultant. I had resigned myself a long time before this to the probability that I would never see any improvement in my widespread vitiligo and that I would not live to see a cure. (Of course, there is still no official cure – but then, I’m not dead yet either!) But, since I was able to buy the supplements at wholesale, I thought “it’s got to be worth a try – what have I got to lose”.
Neither supplement was advertised as being designed for vitiligo. But, on reading up on their ingredients, I noticed that a lot of them were nutrients that kept cropping up in the clinical and anecdotal vitiligo treatment literature on the internet. This is what prompted me to give them a go.
The first supplement (called Boost) was actually advertised as promoting a richer, longer-lasting tan when sunbathing. Of course I knew that my white patches (which by that point in my life covered about 80% of my body) never tanned. They just went pink and then back to white again. But, once I started to think about it, it occurred to me that the reason I had developed vitiligo in the first place might just be that, for some reason, my body lacked some of the nutrients necessary for producing #pigment.
The other supplement (called Five a Day+) was a blend of 21 green “superfoods” designed to promote general good health and vitality. I didn’t have any particular reason for thinking that this might bring back my lost pigment. But, since I had suffered from poor digestion and chronic fatigue almost all my life, I thought it would at least be a good tonic. At the time, I didn’t know anything about the powerful health properties of green foods (beyond the fact that vegetables were good for you, that is). I now know that, for one thing, they are the richest source of antioxidants – which are nature’s best weapon against cellular damage. I also now realise that one of the 21 ingredients of this product (Catalase) breaks down hydrogen peroxide, which scientists have since found is present in higher levels on the skin of vitiligo patients and which they think may be responsible for the destruction of melanocytes, leading to vitiligo. (This explains why Pseudocatalase is one of the few vitiligo treatments with an impressive track record.)
Given that my trial of these supplements was really only based at the time on a vague hunch (rather than the more informed perspective that I now have, thanks to extensive research of the internet), I approached it with low expectations but a commitment to give this nutritional experiment a fair trial. I had read on the Boost literature that it should be taken in conjunction with sun exposure, so I resigned myself to the fact that this would increase the contrast between my white patches and the rest of my skin and sat out in the sunshine as many times a week as the British Spring and Summer would allow. Well used to disappointment, I resolved to continue with this process but not to get my hopes up - I’d been down that particular road before.
If I had had any real expectation of success at the time I would have taken loads of proper “before” photos for posterity (the ones I do have are pretty dramatic, but the contrast could have been even clearer if I’d taken the before shots earlier, before the first freckles started to appear). But, as anyone with vitiligo knows, allowing anyone to see you (never mind photograph you) without camouflage or clothing to hide behind is scary. And seeing yourself in pictures looking like a mosaic can be so depressing that it’s much easier to avoid the whole thing. So, imagine my shock – and complete delight – when about 6 weeks or so later I started to see a swarm of freckles appearing on my previously completely de-pigmented chest and a few emerging around my “panda eyes”!
Since then I have gone on to regain virtually all of my lost skin colour. Only someone who has suffered with a disfiguring skin condition will understand what this means. I know that some people with vitiligo are mentally tough enough to embrace it and not allow it to upset them. But, for most of us, it is the cause of daily distress, hassle, embarrassment and, often, bouts of depression. This is why – until an alternative, universally acknowledged cure is found – I will continue to tell my story in the hope that it will help others to experience the same life-changing recovery as I have. I’m realistic enough to recognise that the approach I used may not work for everyone (vitiligo is a complex condition – a simple cure would have been developed by now if that weren’t the case). But, at the very least, I want my experience to offer vitiligo sufferers proof positive that it IS possible to get your natural skin colour back, even after 50 years.
My name is Caroline.