A FLY IN THE VITILIGO OINTMENT
Those of us who live in the north of England have to grab every opportunity to enjoy whatever sunshine we can – whenever we can. The weather pattern here over the past few years has been characterised by pleasantly warm, sunny days in spring and autumn, either side of a massively disappointing summer. So the past few weeks have found me taking every possible moment in the garden, enjoying the last of the warmth for another year. This is a great way of topping up the skin pigment in advance of the long, cold winter months ahead as an ongoing part of my protocol for keeping vitiligo at bay.
There is just one fly in the ointment – well, a lot more than one actually. Because we live close to water and surrounded by trees, we find ourselves plagued by mosquitoes and gnats during this season, clouds of them, humming and swarming around by the thousand, just waiting for the chance to feast on human blood.
These insects are typically the object of much swatting, scratching and cursing. But for anyone with a sensitive skin, they are not merely irksome; they can represent a real health hazard. Fortunately for me, the mosquitoes that frequent our garden are not the sort that carry serious diseases like malaria or dengue fever. However, their bite can still cause significant irritation which is something I try hard to avoid, given my history of vitiligo. If you have vitiligo (or any other inflammatory skin condition) it is important to be aware that physical trauma of any sort to the skin can trigger a flare up, so it makes sense to avoid not just cuts, bruises, abrasions and burns but stings and bites too.
Are insects attracted to pale skin?
Have you ever wondered why some people seem to attract #insect-bites far more than others? It would be an exaggeration to say that this question has kept me awake at nights but I’ll admit it does intrigue me. Take my mother-in-law (no jokes please) – she always ended up smothered in bites whenever she travelled anywhere that had a significant bug population, even when everyone around her remained virtually unscathed. I used to wonder if this had anything to do with the fact that she had exceptionally pale skin. Then I also noticed that, whenever I was bitten myself, it was nearly always on my #vitiligo patches. Given that I was 80% de-pigmented when my vitiligo was at its height, I suppose there is no major surprise there, statistically speaking. However, even as the number and size of my lesions dwindled, it still seemed to me that any bites I suffered were restricted to these particular hypo-pigmented areas. I even wondered if the almost translucent skin found in vitiligo patches might act like a "shop window" advertising the juicy veins below to every passing mosquito. Whatever the explanation, I was convinced there must be something about very pale skin that is irresistible to these blood-sucking critters.
Well, to my surprise, my best efforts at finding a scientific basis for this perception came up with no hard evidence at all. Whilst no one knows definitively why some people are more attractive to blood-sucking insects than others, there are a number of reasonably well established theories but none of them suggests that pale skin plays any part. It seems that the tastiest people, as far as mosquitoes are concerned, are those with type O blood, those who sweat or breathe more heavily than others, pregnant women and anyone who has a raised body temperature or has recently consumed alcohol.
Genetics are thought to be a factor, meaning that susceptibility probably runs in families, but there is very little evidence that colour plays a role, except that mosquitoes are apparently more likely to bite you if you are wearing dark coloured clothing. If this is true – and if it holds true for dark skin, as well as dark clothing - that would seem to fly (no pun intended) in the face of my own observations… unless, of course, bugs really do prefer fair-skinned victims and dark clothing simply serves to make human skin look paler by comparison(?).
Perhaps my perception is due to the fact that bite marks just look more conspicuous on fair skin than they do on darker complexions. It is certainly true that sensitive skins react more severely to insect bites, producing larger, angrier-looking welts and more histamine, resulting in more itching and inflammation and this is the last thing you need if you suffer from vitiligo, especially as scratching can lead to further de-pigmentation.
Choosing a safe and effective bug repellent
Insect repellents containing DEET are generally thought to provide the most reliable protection but the chemical ingredients contained in these products can prove to be just as inflammatory to vitiligo sufferers as being bitten. So the burning question is: are there any natural alternatives that actually work?
Some people claim that garlic is equally loathed by these tiny vampires as by their mythical cousins. But I suspect that gobbling massive quantities of this malodorous condiment, or rubbing it on one's skin, would succeed in keeping more than just the insect population at arm's length.
Some people maintain that vitamin B12 wards off mosquitoes but others claim that this theory has been discredited. (Although, if there were some truth in this, would the fact that most vitiligo sufferers are deficient in B12 offer an explanation as to why insects seem to favour de-pigmented skin? Maybe.)
Neem oil is significantly effective at repelling bugs but has a very strange odour if used in suitably high concentrations. This can mean that the more repulsive bugs find it, the more repulsive we humans find it too! Mixing it at a ratio of 1:10 with coconut oil makes it less pungent but this reduces its effectiveness and it can be a bit messy to concoct and to apply.
Citronella oil is probably the best known natural insect repellent and is a popular ingredient in outdoor candles for that purpose. However, it does not work as effectively on skin as its non-natural, DEET-based counterparts and it evaporates so quickly that it only offers very short-term protection. Worse still, it is a known skin sensitiser that can cause allergic reactions.
Citriodiol, on the other hand, appears to tick all the boxes. Also known as Oil of Lemon Eucalyptus, Citriodiol is a natural ingredient that has been proven to be just as effective at repelling insects as the best-performing DEET products, as well as being safe for use on children as young as 6. And, whilst it causes bugs to hold their nose and run for cover, it actually has a rather pleasant menthol smell, meaning it is unlikely to result in anyone of the human variety having to do the same.
Mosi-guard citriodiol-based natural insect repllent is available in either spray, stick or roll-on.
From the first moment a person notices a strange white patch appear somewhere on their skin, they start – whether they realise it or not – to develop coping strategies. There is no right or wrong way to #cope-with-vitiligo. After all, we are all different and different approaches work for different people. But it is worth being aware that some approaches are constructive whilst others may be self-destructive and counterproductive. Which of the following do you use?
1. Ignore it and hope it will go away
This is often our first reaction to seeing changes in our skin. We hope it is just one of those things – like a rash or a fungal infection and we imagine that it will clear up on its own. When we realise this is not going to happen we visit our doctor, full of confidence that a prescription for some cream or a course of tablets will sort us out. It is usually at this point that we receive a diagnosis of vitiligo, along with the customary uplifting talk (you know the one - “incurable… tough luck… just be glad it’s not cancer", etc.,etc.).
2. Cover it up and try not to think about it
This strategy differs slightly from the first one because it involves a conscious effort to hide the condition from others (and even from oneself too). If you can hide it well enough under clothing, makeup and camouflage no one will notice and you won't have to think about it either (just as long as you avoid mirrors every time you remove your disguise).
3. Keep clam and address the problem
Most non-life-threatening skin complaints are relatively simple to treat. So it is not unreasonable for our first reaction to be to visit our doctor, see a dermatologist, try our local pharmacist, health food shop, herbalist or alternative therapist or simply to reach for the medicine cabinet in our attempt to solve the problem. However, the absence of any significant help from these sources usually brings us to the realisation that, if we are going to find any real solutions, we are going to have to take charge of our vitiligo ourselves.
4. Give way to panic and despair
You know you are doing this when you find yourself checking the mirror every hour or so, looking for new lesions or wondering if the ones you spotted earlier were just a trick of the light. You alternate between crying, praying and bargaining with God: you promise never to complain about anything else ever again and to devote the rest of your life to doing good deeds if only you can wake up tomorrow morning to find your normal, even skin tone has been restored to you. You can think of little else other than your skin; you obsess over the size and number of lesions you find each day and you look at other people walking around with their perfect complexions and ask "why me?"
Our instinct for self-preservation is very strong, so it takes a lot to cause a person to want to harm themselves. But a condition like vitiligo, which can totally undermine our sense of security, confidence, even our sense of identity, is sometimes so overwhelming that it can lead to self-destructive behaviour like substance abuse or socially harmful behaviour like pushing away friends and family. This goes way beyond the occasional bout of self-pity and is something that may need professional help. There is no shame whatsoever in this and I would urge anyone who is feeling overwhelmed (like the lady who emailed me recently and admitted to suicidal feelings) to find a professional to talk to about it before things go any further.
6. Scour the internet for cures
By the time the internet had become the obvious go-to destination for the answers to all of life's questions, my vitiligo had all but gone. But I know that the first thing most people today do on receiving a diagnosis of vitiligo is go online. Spending hours on end, searching the internet for answers, trying out every remedy going and learning everything you can about the condition is, on the whole, a wonderful opportunity that was not available to previous generations of vitiligo sufferers and I am a big advocate. But, as with anything else, it is a two-edged sword that needs to be approached with common sense and moderation if you are to avoid becoming totally obsessed or, worse, falling prey to unscrupulous charlatans.
7. Embrace your vitiligo
This attitude has become much more prevalent since social media gave people around the world a way of sharing their experiences and photos and since awareness of vitiligo has increased (albeit from practically zero to just above barely visible). As coping strategies go, it is a very positive one. But, since it requires the individual to be completely open about their pigment loss and expose themselves to the scrutiny and curiosity of others, it is not for the faint-hearted. If this approach is not for you, you should not feel guilty about that. No one can tell you how you should deal with your vitiligo. Not everyone is able to embrace theirs. It only works for some but, when it does, it is certainly very inspiring to the rest of us and helps to raise awareness further.
8. Turn it into something creative
Some people are able to go one step further than simply embracing their vitiligo. They decide that, since life has handed them a lemon, they will make lemonade. #Winnie Harlow has built a highly successful modelling career around her vitiligo. #Kartiki Bhatnagar turned her vitiligo patches into beautiful art, #Keira Walcott created her own makeup range and broadcaster #Lee Thomas became a prominent vitiligo ambassador, author and motivational speaker. And these are just a few of the individuals who have turned their skin condition to inspirational advantage.
9. Draw strength from others
Drawing strength from others can be a powerful and mutually satisfying way of coping with any difficult situation. Whether our inspiration and support comes from celebrated individuals like those above, from "ordinary" vitiligo friends we encounter on forums or at meetings or from our network of family and friends, the love, acceptance, wisdom and humour of others is sometimes the best medicine we could ask for.
10. Give strength to others
This is often a natural consequence of the previous strategy and, in my experience, is even more powerful. When we look to others for help and support, we find ourselves sharing our own experiences, feelings and life lessons too and so the benefits flow both ways. Not only that, but I believe that the greatest hidden benefit of having to cope with a challenging condition is that it increases our appreciation, compassion and understanding of others. I used to think that people who claim it is better to give than to receive must be either hypocrites or saints. But now I think they just have a better understanding of how human beings work than I did.
It’s clear to see which of the above strategies are constructive and which are the opposite. And it is equally clear that adopting a constructive strategy (or maybe several) is the wise choice. But for many people living with vitiligo the psychological distress of seeing their skin colour disappearing before their eyes, and dealing with all of the consequences of this, is so severe that arriving at that choice does not come at all easily. For them, adopting a positive coping strategy is not a one-time decision: it is a journey that has its highs and lows and takes as long as it takes. It can feel like a solitary journey but I hope that everyone reading this now realises it does not have to be made alone.
My name is Caroline.