Last Updated on 19th October 2023 by Caroline Haye
Ironies and contradictions
In part 1 of this article I referred to some of the mysteries and complexities that still surround vitiligo, even after a decade or more of increased awareness and scientific progress. Finding answers to these can feel a lot like searching for one particular pebble on a very large beach. But the search iteself can be illuminating, whether you stumble upon that one elusive pebble or not. So, to round off my thoughts on the subject, Why vitiligo is so confusing, part 2 will focus on some of the ironies and contradictions that continue to fascinate and infuriate me about this frustrating skin condition.
Ironies
The late, great actor John Hurt was bang on when he observed, “Life is full of ironies and paradoxes”. I’m sure he wasn’t the only one to have noticed that it sometimes feels like the universe is playing a practical joke at our expense. And no part of life is exempt from this, not even our health. Not even vitiligo.
Most of the ironies that I have observed in the context of vitiligo have this in common… The fact that the very things that our instinct and logic tell us to do as vitiligo sufferers are often the self same things that make the condition worse. In other words, as fast as we try to improve our condition or quality of life, we may in fact be creating the opposite effect.
Make-up and camouflage
For example, covering up your white patches with skin camouflage or self-tan products is an obvious strategy to adopt. And it’s one that can work very well from a visual perspective. But many of these tanning products and cosmetics contain skin irritants like perfumes and harsh chemicals that are likely to cause inflammation and trigger further pigment loss.
Mainstream make-up products also contain ingredients that pose a risk to anyone predisposed to vitiligo. And some of the worst offenders are the very products you might be tempted to use as a way of hiding, or distracting from, lesions on your face. In particular, eyeliner, mascara, glitter and transfers all have ingredients that may pose no particular threat to the average person but carry a real risk of depigmentation to anyone with a vitiligo susceptibility.
Attempting to camouflage white hairs, lashes and brows with hair colouring products, lash / eyebrow tint, mascara or false lashes would seem to offer a simple cosmetic solution. But, again, the paradox is that the vast majority of these products contain a cocktail of dyes, adhesives and other harsh chemical ingredients that can lead to more white patches.
Body art
Trying to mask vitiligo lesions with permanent tattoos is another strategy that would seem to make a lot of sense. But tattooing involves, not one, but two of the highest risk factors for aggravating depigmentation: trauma and direct contact with ink / dye. So in successfully concealing one area of vitiligo, you actually risk causing it to spread.
Piercings, like tattoos, may help to mask patchy areas of skin but they also involve skin trauma, which tends to have an inflammatory (Koebner) effect in those of us who are prone to pigment loss. So, in my opinion, they are not the great idea they may seem to be at first sight.
Avoiding the sun
Staying out of the sunshine is another seemingly sensible thing to do if you want to minimise the contrast between your vitiligo patches and the surrounding skin. But avoiding UV light can lead to vitamin D deficiency (a phenomenon frequently associated with vitiligo) which may be one of the factors that contributes to the condition. And, of course, and it also means your skin misses the stimulus it needs in order to produce new pigment in the form of a tan.
Contradictions
In addition to the paradoxes I have mentioned so far, there are also some completely baffling contradictions that seem, on the surface at least, to defy reason. For example…
Sunshine is both good and bad
Two contradictions come to mind when I think about the effects of sunshine on vitiligo. The first is that sun exposure is vital in order to create skin pigment and yet it can also trigger pigment loss. (The explanation for this almost certainly being a matter of degree. See Is sunshine good for vitiligo?) And the second is that while vitiligo skin is more likely to burn than normal skin, it is less likely to develop skin cancer. (This fact has been well researched and this scientific paper is one of many reports that explains more.)
Vitiligo can worsen even as it improves
Vitiligo friends sometimes tell me that some of their white patches are shrinking or freckling at the same time as others are spreading, which seems to make no sense. I had previously believed that there were only three possible phases of the disease. It was either getting better, getting worse or staying static. (Maybe I thought this because mine only ever did one of these at a time. It spread for nearly 50 years and then it progressively reversed without any setbacks or relapse and has been in remission ever since).
So I can only assume that this contradictory situation occurs when an individual experiences both positive and negative effects on their pigmentation at the same time. For example, they might be gaining new pigment thanks to phototherapy or topical treatments but simultaneously suffering from a nutritional deficiency. Or they might be healing from the inside, thanks to nutrition or pharmaceuticals, whilst also exposing their skin to external triggers.
Some vitiligo remedies are also vitiligo triggers
Some foods are so full of nutrients that they earn the title “superfood” and may even feature in supplements known as nutraceuticals because of their outstanding therapeutic properties. The individual ingredients in the green food supplement I use, for example, seem to benefit everyone who consumes them. But there are some that divide opinion. In particular, some vitiligo sufferers swear by turmeric as a vitiligo remedy. And yet, research suggests that regular consumption of this spice actually increases oxidative stress in vitiligo patients. (More on this subject in Turmeric: friend or foe.)
Making skin more sensitive to UV light helps and so does the opposite
The use of photosensitising agents to stimulate pigmentation has a positive track record in both traditional and modern western medicine. For example psoralea seeds are a common ingredient in herbal remedies and are also the basis of psoralen, as used in PUVA treatment.
But, confusingly, other herbal remedies (like Polypodium) that have the opposite effect on skin also appear to help the repigmentation process. So how can both therapies work if they do opposite things?
I can only assume that the answer to this question goes something like this… The aim of photosensitising agents is to cause skin to react faster when exposed to sunlight or phototherapy and start producing new pigment. Whereas the aim of photoprotective agents like Polypodium is to allow for longer UV exposures, which also stimulate new pigment. So both approaches can work – at least for some people, some of the time.
Confused yet?
If you aren’t feeling at least a little confused by now I’d be very surprised. There is no getting away from the fact that vitiligo is a complicated and seemingly contradictory disorder. After all. it has taken traditional medicine centuries of trial and error to unearth the handful of natural therapies that currently offer a degree of success. It has taken generations of scientists to come up with the first pharmaceuticals specifically aimed at treating the condition. And still there is no definitive cure or even total agreement on what actually causes it. So it’s no wonder that vitiligo sufferers themselves struggle to get their heads around these complexities.
But, that said, I hope that my attempts at demystifying a few of the apparent ironies and contradictions of vitiligo here have helped shed a a chink of light on them and that maybe the subject doesn’t seem quite as confusing now as it did when you started reading this two-part post. Like all subjects, I suppose, the deeper you delve into them and the more you think logically about them, the less baffling they become. One thing is for sure. The more you can learn about vitiligo – even as a complete novice – the better your chances of managing it well and making sound decisions about your future treatments and self-care.
2 thoughts on “Why vitiligo is so confusing: part 2”
Thank you for this post, Caroline. Our condition certainly is confusing. Kind of like this Monty Python comedy sketch:
https://www.youtube.com/watch?v=ohDB5gbtaEQ
Best regards and hopes for peace on Earth,
Gösta
Ha, ha! Thank you for reminding me about ths sketch. It was one of my favourites. Let’s hope that vitiligo will eventually give up the argument! 😉