... and 5 reasons to love summer
As we approach the end of summer 2018 (an unusually long, hot and dry one for us here in the north west of England) I find myself trying to hold back time, willing the trees to hang on to their leaves and wishing the nights were not drawing in that little bit more with each passing day. People often complain about the weather in our neck of the woods because summer temperatures and clear skies rarely match those in the south and east of the country. But, in a year when so many parts of the world have experienced extreme heat and freak flooding, we have been blessed with four months of uninterrupted and near-perfect gloriousness. And I confess that the prospect of leaving this behind and braving another cold, wet and windy northern winter sends my heart sinking into my fur-lined boots.
How the changing seasons can affect vitiligo
I realise that my enthusiasm for the lazy, hazy days of summer is not typical of someone affected by #vitiligo. In fact, it is so far removed from my past response to the season as to be almost shocking in its contrast. Before my vitiligo reversed (over eight years ago now) “good weather” used to be something other, “normal”, people smiled about but which created nothing but hassle and depression in my little world. This was a world that consisted of impossible clothes choices, time-consuming camouflage routines, an overwhelming sense of being different from everyone around me and an envious resentment at missing out on the fun and freedom that most people associate with warmth and sunshine.
Some people with vitiligo (those who do not let their appearance define them and are strong enough to meet curious stares and thoughtless questions head-on) may find my former attitude negative and destructive, and they would be justified. I did try to fight it – and sometimes succeeding for a while – but it was always there inside me and the very effort of suppressing it just added to the overwhelming sense of exhaustion that comes with constantly struggling to hide a progressively disfiguring condition behind a facade of normality. Although this may sound overly dramatic, many readers will, I am sure, understand exactly how I felt because they will be feeling the same way. If the state of mind I have just described is familiar to you, then you are probably only too happy to see the days shorten and the winter sweaters come out of mothballs.
Whatever your own perspective on this subject may be, I’d like to take this opportunity to remind us all that there are always as many reasons to embrace the changing seasons (assuming you live in a part of the world that has such changes) as there are to regret them. So, here – in true blogging tradition – are 5 reasons I would suggest everyone with vitiligo look forward to each summer and 5 reasons to welcome winter…
Reasons to love summer (and look forward to the next one)
Reasons to welcome winter
The best season is always NOW!
I feel immensely grateful that I am able to embrace the summer months now that I have my normal skin colour back again. But maybe I need to remind myself that winter has its own delights which should be also be savoured. For so many years I longed for each summer to end so that I could hide my patchy skin from the world for another few months. But perhaps the heightened sense of euphoria that I now feel each summertime has dulled my appreciation of the rest of the year.
It is this realisation that has prompted me to look again at all the good things winter has to offer – after all, no one wants to wish their life away yearning for the months to pass: life is far too short as it is. So, this year, I am determined to embrace the shorter days, the dramatically leafless trees, the frozen ground and the icy winds because, when you come to think about it more deeply, there are actually countless reasons (not just five) to appreciate all the seasons of the year. And the best way to enjoy each one is to recognise the fact that the best time of year is always right NOW.
How gratitude can promote health and beauty
How many times in your life have you wished – and been wished in return – a happy, healthy and prosperous new year?
I know that, for some people – and I used to be one of them – such wishes can seem irrelevant when all you really want is to feel comfortable in your own skin. During the decades before my recovery, I can remember thinking that I would be willing to trade every one of my new year hopes, dreams and wishes for just a single one: to be able to look at myself in the mirror and see a whole human being, not the vitiligo “jigsaw puzzle person” that I had become.
Vitiligo had turned me into a jigsaw puzzle version of myself
I didn’t constantly dwell on such thoughts, of course. Usually, I pushed them to the back of my mind and got on with life as most of us do when we are faced with no alternative. I have always been a predominantly positive thinker and I tried to maintain a cheerful attitude, reminding myself that there are very many worse afflictions in life than having vitiligo. And whenever I found my mood at odds with this logic (and, let’s face it, depression has precious little to do with logic) I looked for strategies to avoid sinking into a pit of self-pity. One of the most helpful and uplifting of these was to keep a “gratitude journal” in which I wrote down 5 things every night before going to sleep for which I felt truly grateful. This helped a lot, and it is a discipline I can heartily recommend to everyone, whether they are depressed or not and whether they have vitiligo or not. It restores some much-needed perspective, feeds the spirit and, in the process, lets our inner beauty shine through. This, of course, is far more important than the colour of our skin, be it black, white, patchy or turquoise with yellow polka-dots.
How an attitude of gratitude changed my outlook
The lessons I learned from keeping my journal and counting my blessings were priceless (and, of course, I dutifully added these to my journal too). They improved my outlook on life and, I believe, made me a better and healthier person, but I still longed for a vitiligo cure. You see, I believe that, whilst it is both admirable and practical to accept the adversities of life that we cannot change, it is only natural to want to change them if it is at all within our power. And, as it turned out, reversing vitiligo was within my power. It just took me 50 years to find that out.
In spite of the general mood of pessimism and hopelessness that so often seems to surround vitiligo, I always believed that a #cure would one day be found. And, until that day came, I sometimes fantasised (and occasionally, literally, dreamed) that I would wake up one morning to find my skin restored to its original, even colour. Well, no absolute cure has emerged yet (although I am still convinced it is only a matter of time) but my fantasies did eventually come true. I didn’t wake up one morning to find my vitiligo patches gone. It took 18 months or so. But, strangely enough, seeing my pigment return gradually was probably even more exciting than if it had happened overnight.
The first few freckles would have looked insignificant to anyone else but, to me, they were nothing short of miraculous. In fact, I didn’t believe they were real at first. I thought they must have been the remains of a self-tanning cream that I sometimes used to use for camouflage. So I applied an exfoliating scrub (which I don’t recommend, by the way, as any kind of abrasion can aggravate vitiligo) in a fruitless attempt to remove the little brown dots. Then it dawned on me that the marks were, in fact, pigment! That realisation is a moment I shall never forget and the whole process of #re-pigmentation that followed was a journey that thrilled and energised me in a way that no one else could possibly understand unless they also had vitiligo or maybe a comparable condition. The emotions I experienced during that time – and which I still feel today – would fill a whole library of gratitude journals :)
You never know what new hope tomorrow will bring
It’s strange to think, writing this now in January 2018, that this time 8 years ago I was wishing – and being wished – a happy, healthy and prosperous new year at a time when my vitiligo covered 80% of my body. I don’t remember if I was feeling particularly despondent at the time. I don’t think I was any more than usual. But it would have been on my mind, off and on, as it was for most of my life. And I certainly would not have been expecting the year 2010 to bring about any change in my skin, unless it was for the worse. (This had been my whole experience up to that point.) But, the fact is that 4 or 5 months later I stumbled upon the particular combination of lifestyle changes that would trigger a completely unexpected and marvellous reversal of my de-pigmentation. And, by the time the following new year came around, I had regained roughly 70% of my lost colour and was confidently looking forward to recovering the rest.
I won’t bore you here with the story of how this came about because you may already know it (and, if not, you can read it here). But, what I particularly want to share with you in this post is two of the most precious lessons that life has so far taught me through my vitiligo – and for which I will always be immensely grateful: firstly, that we don’t always get to choose the hand that life deals us but that finding and appreciating the many good aspects of that life is something that enriches us and those around us; and secondly, it is always too soon to give up hope that a skin condition like vitiligo can be reversed.
I have noticed that nurturing a sense of gratitude brings with it a host of positive consequences beyond the obvious ones and renewed hope for the future is one of them. So, since it is early January now – and even if you are reading this at any other time of the year - what better time could there possibly be to start a gratitude journal? I promise you that, if you do, you won’t regret it.
MANY VITILIGO OPPORTUNITIES
I used to think that there was one single cause of vitiligo and that one day a team of scientists somewhere would discover what it was and produce one single cure. I thought this because I am a great believer in getting to the root of problems rather than simply patching up the symptoms. I assumed that most disorders had just one root cause, if you were able to trace their development back far enough. It remains to be seen if this is true of vitiligo, but my own experience of re-pigmentation has convinced me that it is definitely worth tackling the shoots of the problem, even if we don’t yet have the technology to cut it off at the root.
If the root cause of vitiligo is a specific defective gene that makes some of us susceptible to pigment loss, as some scientists believe, then the goal must be to devise a genetically engineered cure. Such a definitive solution would render every other vitiligo therapy unnecessary and spare millions of people a lot of misery. But, until that day comes - and it may not be far off - it is important to realise that there are other viable options available to vitiligo sufferers, including therapies that can halt and reverse pigment loss at any stage of its development (as my own experience proves).
One of the worst effects of being diagnosed with vitiligo is the feeling of helplessness that comes with being told you have an “incurable disease”. This description, so commonly used by dermatologists the world over, is enough to depress even the most optimistic individual. It can feel like a life sentence, like doors closing and robbing you of control over your own future. But the fact is that you do have control and you do have choices. At their simplest, these can be boiled down to four options:
These four options are not mutually exclusive: most of us have adopted a combination of all of them at different times. But the trouble with allowing yourself to drift - or maybe even ricochet impulsively - from one to the next and back again (as I did for many years) is that it is unsettling, exhausting and gets you nowhere. Not deciding on a definite approach to your vitiligo can, in fact, amount to a decision to be a victim for the rest of your life, snatching moments of contentment between the all too frequent reminders of your deep discontent. Choosing a definite path to follow can be an empowering psychological step: one that immediately reverses the balance of power between you and your white patches, putting you back in charge.
So which of the four options would I recommend you take? The one that makes you the happiest and healthiest of course. I can’t tell you which that would be (although it is pretty obvious which one it isn’t!)
It’s your choice
Number 1 might, arguably, involve the least hassle and the greatest level of contentment, as long as you had the right temperament to achieve it. Not many people are truly able to do this. I couldn’t, so it was not an option that was open to me. (Besides, to ignore a symptom like pigment loss is to ignore the possibility that your body is trying to warn you of underlying health issues.)
Number 2 is only included in the list so that you can put a big, thick red line through it and, hopefully, never give it another moment’s thought.
Number 3 is the most common, and immediate, choice for the majority of us. If we develop symptoms we go to our doctor – it’s obvious. However, whilst a handful of doctors around the world know how to handle cases of vitiligo, the chances of finding one are remote. The only thing your doctor or dermatologist is likely to know is how to do is diagnose it (which is the one good reason for making an initial appointment).
Number 4 is – in my opinion and in my experience – the best, most effective and empowering option of all and the one most likely to bring you psychological and physical wellbeing. Taking charge of my own therapy was the best decision I ever made and has brought benefits beyond my own health and happiness. The reason I say this is because, in reality, there is a fifth option open to us: and that is to reach out to others affected by vitiligo and offer them the benefit of our own empathy and experiences - but that opportunity is more likely to present itself once you have already chosen a positive approach for your own personal vitiligo journey.
Vitiligo has been a journey of discovery
It is ironic that, during the 5 decades I suffered with widespread vitiligo, I understood very little about it, yet in the 7 years since my re-pigmentation I have absorbed massive quantities of information on the subject. No doubt, this is partly because coping with the practical and psychological difficulties of living with the condition on a day-to-day basis required time and effort which left little of either to put into research. Added to that is the fact that part of my coping strategy was to cover up my white patches and try to forget about them. So, obviously, the last thing I felt motivated to do was make a study of them. Of course, there is also the fact that publicly available information on vitiligo was almost non-existent during those years and – perhaps most significantly of all – there was no internet for the majority of that time, so resources were scarce.
It was not until my own need for answers was effectively removed by my unexpected recovery that I found I was nevertheless fascinated by the subject and passionate about gathering and sharing information on the causes, effects and treatment of vitiligo. And, if there is one thing I have learned as a result of all my hours of detective work, it is that it is complicated.
Vitiligo is complex: but this presents opportunities
Of course, almost any disease (if vitiligo can be called that) is bound to seem complicated to someone like me, given that I have no medical training. But, based on my observations, this ranks me slightly behind the experts and significantly ahead of most doctors!
Given how complex the causes and processes behind pigment loss evidently are, there is no simple way to tackle it. That’s the bad news. The good news, I have come to believe, is that – precisely because there appear to be so many layers of causality involved – this means that there are also multiple ways of interrupting the process, thereby allowing the body to start healing itself. And most of these therapeutic opportunities are available to us all because they are based on nature and some basic logic. This means that we do have the power to take control of our own therapy.
There may not be much we can do about our defective genes but there is a lot we can do to halt the domino effect of events that can lead us from that state of susceptibility, all the way through the physiological maze of cause and effect, to the appearance of white patches on our skin. And by taking action we also stand to heal ourselves of the many other symptoms (poor digestion, poor nutritional status, fatigue, allergies, autoimmune conditions, etc., etc.) that so often accompany vitiligo but are rarely picked up on in that context by medical practitioners, not mention the feeling of helplessness I referred to earlier.
I have written a lot about taking responsibility for one’s own recovery in my blog (mainly from a nutritional angle, since this proved to be the key to mine) and I shall continue to write about it in as much detail as I can. But the short version comes down to this: vitiligo - and general health - responds to the following strategies if you are willing to explore them intelligently, consistently and patiently...
You needn't give vitiligo the green light
In short, regardless of whether or not vitiligo stems ultimately from a single root cause, there are certainly multiple subsequent events that need to occur in the body in order for a susceptibility to pigment loss to become vitiligo. It is as if we have a series of traffic lights inside us that - if left on green - will speed the flow of the disease from its starting point to its final destination (“Patchyskinsville”) and all we have to do, in order for this to happen, is nothing. Alternatively, we have the option to turn as many of those green light to red as we can. Every stop light is an opportunity to interrupt the progress of the disorder. This may not alter our genetic predisposition to pigment loss but it can certainly stop it dead, turn it around and send it back where it came from. Not only that, but halting the vitiligo traffic is also likely to give priority to all the healthy processes in our system to flow as they should, meaning that our overall health will likely improve at the same time.
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.
Vitiligo on TV makeover show
Earlier this month I watched Katie Piper’s Face to Face, a #TV documentary on Britain’s Channel 4 presented by a former model, in which she invited women with a variety of face-altering skin conditions to have a makeover. What made this programme so different from all the other makeover shows I have ever seen was that Katie herself has severe facial scars which she sustained several years ago when she was the victim of an acid attack. And, unbeknown to her guests, each of the make-up artists on the show shared the same facial condition as the person they were making up. The whole show was absorbing but I was, of course, particularly interested in the #vitiligo-makeover.
The big reveal
The most dramatic twist of all was "reverse big reveal” at the end of each makeover when, to the surprise of the person sitting in the make-up chair, the artist wiped off their own cosmetics to reveal that they too had the same condition. The effect of this was both moving and uplifting because it was so unexpected and, in a strange way, so intimate. This was definitely not your average makeover show (although there were some useful tips for anyone interested in cosmetics and camouflage) and it was certainly not about glamorous professionals helping to transform poor, needy victims by teaching them to hide their scars. It did show that make-up is a potentially empowering, but completely personal, choice for anyone whose face is different from the accepted norm. But, much more importantly, it showed the power of shared experience and mutual compassion between the invited guests and their make-up artists (some of whom were self-taught, rather than professionals). Seeing their reactions, I was reminded of the tremendous power of mutual support. Because, no matter how kind and well-intentioned a person may be, it takes someone who has been through a face-altering experience to truly understand how this makes a person feel.
One shared experience: two different ways of coping
The show also highlighted the different ways in which individuals cope with their skin condition. Rochelle, the guest with vitiligo, had come to terms so completely with her two-tone skin that she actually found the cosmetic transformation into airbrushed perfection rather unnerving, whereas Nancy, the artist who performed the makeover, relies on cosmetic camouflage to give her the confidence she needs each day to feel comfortable in her own skin. I found myself in awe of Rochelle's attitude but I completely related to Nancy's because my reaction to having vitiligo had always been to hide it at all costs and every time I removed my make-up and looked in the mirror it use to make me miserable. For me, the most powerful part of their interaction was seeing both of them instantly empathise with the other, whilst accepting that they each had completely different, yet equally valid, ways of coping on a daily basis.
Exposure and coverage
It is good to see vitiligo being shown and discussed in such an open and constructive way on mainstream TV. I am guessing that this will have been the first time that many viewers have ever seen or heard of vitiligo. I have always enjoyed a good play on words, so it strikes me as strangely fitting that a condition that presents each individual with a choice between exposure or (cosmetic) coverage should be in such need of both media exposure and media coverage! There is still a shockingly poor level of awareness and understanding of it, compared to other skin conditions. This widespread ignorance is one of the reasons so many people choose to cover their patches up (which, of course, helps to perpetuate that ignorance). After all, even if you are not particularly self-conscious, who wants to keep having to explain to people what the white spots are? Isn’t it just simpler to hide them and pretend they aren’t there? That’s how I used to feel before I re-gained my lost pigment and, I have to admit that it is probably how I would still feel today. It was my coping strategy then and I don’t suppose I would be much different now. But I do think that the more exposure vitiligo has in the media, the easier it will become for each person to decide for themselves, with no pressure from others, whether they want to cover up or not.
It seems to me that Katie Piper herself has developed a wonderfully positive and balanced attitude towards the role of make-up for those with skin imperfections. At the start of the show, she admits that, like anyone else, she worries about her appearance but, on the subject of make-up, she says she has come to see it as a friend she can call upon when she needs it but never be dependent on.
Having watched the show, I was prompted to find out more about its inspirational host and what impressed me the most when I read Katie's story was the fact that she has clearly emerged from her own utterly horrifying ordeal a stronger and more successful person with a heartfelt desire to use her painful experiences to help others overcome their physical, and emotional scars too.
If you did not see the show it is available to view on this link:
Just like many other medical conditions, #vitiligo shows no favouritism. It affects all ethnicities, old and young, rich and poor, male and female alike. It takes no account of whether or not you are a famous or a good person, whether or not you deserve to have additional problems in your life. And it certainly doesn't care whether or not you feel sorry for yourself – which, if we are honest, we all do from time to time. It’s just one of those things that happens to some people and, depending on your personality and attitude to life, it can either be (multiple choice coming up...you choose the description that best fits you):
Whatever category above you fall into, I am guessing there isn’t a single one of us that hasn’t ever, at least once, asked the question “why me?” So I would like to suggest 3 answers that I hope will help.
The first answer to this question should really be, “why not me?” The question is, after all, a pointless one. In fact, it is entirely the wrong question. It assumes that fate chose to afflict the wrong victim. It suggests that I would prefer someone else to have been cursed with unwanted, unexplained white patches all over their skin. Or, even more nonsensically, it suggests that I might have preferred to have cancer or been paralysed in a traffic accident. It implies that suffering is fine – as long as it happens to someone else! Well, suffering is not fine, no matter who is doing the suffering. But, sadly, it is a fact of life. Most of the time, when we ask ourselves (or fate, or God) “why me?”, we know deep down that we are just feeling sorry for ourselves (which is OK, by the way – at least, it is human). The main trouble with the question, though, is that we are powerless to answer it. And every time we ask it seems to reinforce that powerlessness.
So, my second answer to the question "why me?" is that we should ditch that question for now and ask a different one - one that we have the power to answer. I have come to realise that the most empowering question a person with vitiligo (or any other affliction or adversity, come to that) can ask is "what can I do about it?" And the answer to that question is - "a lot!".
The sad thing is that comparatively few vitiligo sufferers are aware of just how much they can do to reverse their #de-pigmentation and revolutionise their health and happiness. And it's no wonder when you consider how little accurate information is available, not to mention the misinformation that often comes at us, intentionally, from unscrupulous con-merchants and, unwittingly, from well-intentioned but ill-informed doctors.
For nearly 5 decades I believed what I had been told. I believed that vitiligo was a life sentence, that it was a waste of time trying to treat it and that it would only ever get worse. It's no wonder that this prospect caused me to feel sorry for myself from time to time. I am sure I would have continued to believe these things if I had not, more or less accidentally, becomeliving proof that they were all utterly incorrect. If you have read my story of vitiligo re-pigmentation you will know that a somewhat half-hearted experiment with nutritional supplementation and sun exposure seven years ago unexpectedly and wonderfully reversed vitually all of the 80% pigment loss I had suffered by that point in my life. It is too early to say categorically that this recovery is permanent of course because only seven years have passed since then. But I take the fact that I have had no relapse and have only continued improving since then as a good sign :)
In the previous section of this blog I recommended ditching the original question because it was not one we have the power to answer and because it generally encourages self pity. However, there are times when the question “why me?” can be a valid one to ask and actually does have a meaningful answer.
Once I knew, from personal experience, that vitiligo was not the hopeless condition I once thought it was, I finally felt able to return to that initial question but to ask it in a completely different way - a way that led me to an empowering and uplifting third answer. And that answer to "why me?" is: “so that I can empathise with others who are going through what I went through”. Whether you think about it logically - or emotionally - there can really only ever be one helpful answer to the question “why do apparently random bad things happen to certain people”. And that is so they can overcome them and also help other people do the same.
This third answer was the primary motivation for starting my vitiligo blog soon after my re-pigmentation and is the reason I now spend so much of my time learning about what made it happen, reading up on research and corresponding with vitiligo friends. It’s not that I set out with any master plan to provide vitiligo support to others or to become any kind of information source on the subject. It has just naturally developed out of my extreme excitement and gratitude at having recovered to such an amazing extent. And, it has to be said, that this was fuelled by frustration (at times, to the point of anger) that so few genuinely helpful and accurate facts are available to people living with vitiligo to help them ask the right questions and to find the answers that do exist but that are still not common knowledge.
As someone who has a keen interest in language, I believe that terminology is important. How we talk about things influences how we think about them and how we think about them influences what we do about them. That's why I think that the terminology we use when we talk about vitiligo is important. If we aren't careful, it can lead to false assumptions about what vitiligo is and those assumptions can take us in unhelpful directions when it comes to what we choose to do about it.
This is why I persist in calling people with vitiligo “sufferers”, even though I realise I risk the disapproval of others who have decided to embrace their vitiligo by “celebrating their uniqueness”. Don't get me wrong: I respect that attitude totally. I appreciate the value of accepting those things beyond our power to change. I approve of positive mental attitude and I admire everyone who has a philosophical and constructive reaction to whatever hand life deals them. But the reason I never chose to “embrace” the loss of my skin pigment is because I never regarded it as being a normal or natural part of me. Unlike my rather short legs (which I choose to view – through rose-tinted glasses - merely as the result of having a longer than average body) I was not born with white patches on my skin. And unlike the loss of a limb or one of my senses, I never saw vitiligo as an accident or a disability with which I ought to have to come to terms. And, although there certainly were times when I doubted I would ever find an effective treatment in my lifetime, I never truly believed that vitiligo was, in fact, completely beyond my power to change. I see the condition as a sign of sub-optimal health rather than a badge of individuality.
I have always endeavoured to be a “glass half full” kind of person. Nonetheless, I definitely see vitiligo as losing pigment, not as gaining white patches. And my own view is that to seek to normalise it by using positive terminology can in fact be counterproductive because it can cause us to stop seeing it as something we can and should try to treat.
Is vitiligo a blessing or a curse?
Some people claim their vitiligo is a blessing because it makes them unique. I can appreciate what they mean. But, to my way of thinking, it is not the vitiligo that is the blessing in these cases. It is the admirable ability of the individual to find good in a bad situation that is the blessing. I myself feel that good things have come out of my having lived with vitiligo for so many years. It has made me so much more understanding of other people and their problems. It has, I hope, kept me humble. It has helped me to appreciate all the good things in my life and not take them for granted. And, above all, it has given me an empathy for other vitiligo sufferers and a desire to help them whenever possible. So I would say it has led to a number of valuable blessings, for which I am grateful. But I do not regard the condition itself as a blessing and I am more grateful than I can say to have made such a dramatic recovery from something that I always felt was much better described as a curse.
Is vitiligo a disease or a symptom?
Most doctors refer to vitiligo as a skin disease. But, again, I would disagree with this choice of terminology. In my opinion, it isn't a disease in the usual sense of the word. It certainly isn't a viral or bacterial infection. Sometimes it is referred to as a “skin disorder”. This is more accurate, since it is – let's face it - an abnormal condition that is acquired (we are not born with it). However, I think that a more meaningful label for vitiligo would simply be to call it a “symptom”. It is a visible sign that all is not well inside the body. Just as a cough or a rash are not diseases in themselves, neither - in my opinion - is the loss of pigment. All of these things are signals of some underlying issue - maybe a real disease, certainly a loss of full health. And to label it a disease (just like labelling it a blessing) can rob us of the incentive to rid ourselves of it. After all, a disease is something you "have". And, all too often it is something you keep. Once it is diagnosed, it is somehow official, written in stone and "embraced" in a medical context just as surely as it is embraced philosophically by those who call it a blessing.
If we are going to be really pedantic about terminology (oh, go on then, let's - I love a good bit of pedantry now and then!) I would have to say that the white patches that we refer to as vitiligo are the symptom, the process happening in the skin to cause the white patches is the disorder and whatever the underlying cause is is probably the real disease.
Is vitiligo your past or your future?
We never really know what is around the corner. It fascinates me to think that the day before I noticed my first new pigment starting to appear in my 50 year old vitiligo patches I had no clue that it was going to happen. Sure, I had been taking nutritional supplements for about 6 weeks at that point in the vague hope that they might help. But nothing else I tried ever had so I had no real expectations. One day vitiligo was my entire past (having started when I was an infant) and it would be, as far as I knew, my entire future. The next day the impossible had begun to happen and from that point on everything changed.
If, like I did for so long, you are assuming that your vitiligo will always be with you, you might want to reconsider how you talk about it and how you think about it. I'm not suggesting that you can "think it gone" by sheer willpower. If that were possible I'd have been cured decades ago. But I am suggesting that seeing it for what it is - a symptom of a deeper health issue - and thinking of it as your past, not a permanent feature of your future - you may feel empowered to take on this thing called "vitiligo" and be proactive about consigning it to your past.
Skin colour and identity
I'm sure I am not the only person to have occasionally pondered the question “who am I?” We all know we have a physical body but we also know there is more to us than that. So what is it that makes me uniquely me? Am I the voice I hear in my head while I think these thoughts? Am I the emotion I experience in my heart? Or am I spirit, tied to the earth for a while, waiting to soar into infinity when I no longer need my earthly body? Wow – this is a bit heavy for a #vitiligo blog, right? Yes, it is. Don't worry, though. I'm not going to attempt to answer the lofty questions that have occupied philosophers down the ages right here and now! But I do want to touch on the part that our skin plays in the question of who we think we are.
Perception is everything
I don't know who coined the phrase “perception is everything” but – even if it is not quite everything – it certainly accounts for a lot. After all, we base how we respond to others largely on what we see with our eyes, as well as the non-verbal cues we pick up on from them. Most of what we see when we look at another human being (apart from their hair, or lack of it, and their clothes of course) is their skin. We don't see their heart or their kidneys or their bones. We see their outer wrapping, their epidermis. Maybe that is why we care so much about what our skin looks like and maybe that is why so many prejudices, past and present, are based on the colour of people's skin. No matter how many times we may hear the advice that we should never judge a book by its cover, we still do. We judge others by how their skin looks (black, white, brown, freckled scarred, blemished or multi-toned) and we also respond emotionally to what we see when we look in the mirror. And how we feel about what we see affects the signals we send to others. If we are not happy in our own skin, then other people sense this and it adds to whatever perception they already have from looking at us.
Who do you think you are?
Not only is the colour and health of our skin influential in how others perceive us and how we feel about ourselves but it is also fundamental to who we believe we are. Our skin, like our hair and eye colour, is determined by our heredity. It is a highly visible proof of our genetic roots. It is one of the things that reminds us of where we came from and the family background we share with those we love. It can also be a reminder of shared culture and heritage. And, more than that, it is the part of us that we see every day of our lives and which ought not to change (beyond the fact that it may wrinkle with age or tan in the sun). So, when this supremely significant aspect of our appearance and identity suddenly alters for no apparent reason and begins to change from its uniform tone to a patchwork of colour and pure white, the sense of loss of self can be utterly overwhelming.
Vitiligo is not like other skin conditions
Why am I making this point in a vitiligo blog? Surely I am preaching to the converted. Well yes, I probably am. If you have vitiligo you know exactly what I am talking about. But maybe you are feeling as if no one understands what you are going through. Maybe you care about someone who has vitiligo and want a deeper understanding of its psychological effects. Or maybe you are a health professional who has stumbled across this page, in which case I hope it gives you an insight into why vitiligo is not just another skin condition. I am not minimising the distress that can result from other dermatological disorders - unsightly or itchy rashes, sores or dry skin. What I am saying is that vitiligo is different. It is a condition that can strike at the very core of who we feel ourselves to be. It can leave us reeling, wondering what unexplained and unexpected change in our fundamental appearance is going to occur next? Are we suddenly going to sprout an extra limb or a third ear or will we, like the hero of Kafka's The Metamorphosis, wake up one morning to find we have turned into a beetle?
or does spring bring new hope?
March is over. The long Easter weekend is already a memory. Here in the UK we have put our clocks forward an hour, since we no longer need that vital extra hour in the mornings to let the sun struggle high enough to get us out of bed. The first blossom is starting to appear on the trees, daffodils are blooming in glowing profusion and images of long, sunny days and lazy, warm evenings are already taking shape in my imagination. (Of course, this being northern Britain, that is where they may well stay but there is no harm in being optimistic.) I can feel a growing sense of impatience for spring to get under way in earnest and for summer to appear on the shimmering horizon in all her golden glory.
But, before I get too carried away with poetic fervour, I have to remind myself that I have not always looked forward to warm weather as I do now. The very prospect of summer and all it entails used to fill me with anxiety and despondency because I knew that I was about to have most of my coping strategies stretched to breaking point on a daily basis. I knew that, for the coming several months, I would be forced to confront the “thing” that I had been reasonably successful in pushing to the back of my mind all winter long. I would no longer have the reassurance of long sleeves, opaque tights, high necks and scarves. I would soon be flushed out from behind the relative safety of grey days and artificially lit evenings into the unforgiving clarity of the sun, making it that much harder to make my patchy skin appear normal. Not only that, but I knew the hours I would have to spend painstakingly painting out my intricately patterned #vitiligo patches with self-tan. I knew that this exercise would require me to focus all of my concentration on the very condition I so much wanted to forget. And I knew that if, God forbid, the weather was hot enough to make me perspire all that effort would be undone in no time and my face and body (not to mention my clothes) would all end up various mottled shades of white, brown and orange. All these considerations – and many more that vitiligo sufferers the world over will instantly recognise – meant that the very season most people greet with such enthusiasm was the most depressing one of all for me, daffodils or no daffodils.
I can remember how much I loved warm weather when I was a little girl, long before I knew what the little penny-sized area of white skin on my ankle bone would eventually lead to. I was a real Tomboy back then and spent the seemingly endless, sunny days of childhood either in my brother's hand-me-down cotton shorts and T-shirts, climbing trees with the rest of the gang, in a swim suit digging sand castles on the beach or daintily dressed in cool, floral-print frocks and sandals with my hair tied up in a pony tail. Like most children, I loved the feeling of freedom that being in the open air and wearing the lightest of clothes brings. And by the end of the summer the only effect of that small ankle patch was to show off how bronzed the rest of me had become.
As my vitiligo spread in later childhood and into adulthood I often looked back wistfully on those carefree summers and envied my younger self. I also had to try hard not to feel jealous of all the people around me whose enjoyment of the season had remained undiminished and whose perfect skin seemed to look healthier and more beautiful, the hotter the sun became, whilst mine did the complete opposite. I can't honestly say that I always succeeded in keeping that envy at bay but most of the time I simply hid my negative feelings and turned them inward, which was probably just as destructive. I do wish now that I had known my vitiligo would not be a life sentence (which is how it felt). I think that, if I had known I would regain virtually all my lost skin colour later in life and that I would, once again, view summer as a relaxing and happy season I might have coped better psychologically because I would not have felt so hopeless.
I realise that many people with vitiligo today have a much more constructive attitude towards it than I did. They don't obsess over it and they don't let it spoil their fun, whatever the time of year. As it is, I am just very grateful to have been given a second chance to enjoy the simple pleasures that this time of year promises without the mental baggage that used to come along with it. And, thrilled as I am to be rid of my white patches, I don't regret any of my experiences. I can honestly say that I don't wish I had never had vitiligo because I think it taught me compassion. I do wish there was no such thing as vitiligo because then no one would have it! But, given that it does exist, I know that it has ultimately made me a stronger, more empathetic and more appreciative person than I would otherwise have been. And, all things considered, I think that those characteristics are far more important to me – and, I hope to others I come into contact with - than having perfect skin :)
... is curable
In my opinion, the worst symptom that anyone with #vitiligo can suffer is not the loss of skin pigment: it is the loss of hope. If you lose patches of colour, but still have hope, you are so much more likely to find a treatment that helps. But if you lose your hope of finding something, it becomes highly unlikely you ever will. Not only that, but without hope you feel helpless and are not in any position to offer hope, or help, to others.
For years I believed what successive doctors told me and what was written in the official medical literature of the time, which claimed - in so many words - that vitiligo was an incurable, purely cosmetic, non life-threatening condition that must simply be endured. This left me feeling both hopeless and helpless. The only coping strategy left to me was to use every means possible to cover up my white patches and pretend to myself, and the rest of the world, that they were not there. The trouble with that strategy was that, whilst I was successful in hiding it from the rest of the world, undressing and taking off my make-up at the end of the day was a fresh reminder of my “secret life”.
I read recently about an old lady whose Alzheimer's meant she suffered the full force of bereavement on a daily basis every time she found out that her husband had died years before. Well, that is the best way I can describe my feelings during those years. The more successful I became at putting my vitiligo out of my mind during the day, the harder it was to come to terms with it every time I was forced to look at it. What I now realise is that living in denial for decades is incredibly stressful and destructive. The inner tension it causes is like being at war with yourself and you can never fully relax and be the real you. To me, this is the literal definition of being uncomfortable in your own skin.
Looking back on it all now, I think there were probably only two ways I could have relieved this constant tension and they are not mutually exclusive. One would have been to stop trying to hide my skin condition from others and just make my peace with it. Some strong people are able to do this and I cannot describe how much I admire them. But I'm sure many people reading this blog will understand me when I say that I simply didn't have it in me to achieve that kind of acceptance or to expose myself to the curiosity and comments of others. The other way – which I kind of fell into by chance – was to be proactive, rediscover my lost hope and take my treatment into my own hands.
For any readers who don't know the story of my re-pigmentation you can find it here. I won't go through it again in this post. But what I do want to emphasise is that the very process of discovering a protocol that helped my vitiligo finally helped me to stop living in denial. Even though it was just a few freckles to start with, the visible proof that my white patches were capable of producing pigment allowed me to think about my condition without my former sense of despair. Just the very fact of changing my outlook from resignation to being proactive totally changed the way I felt about myself and my whole future. I immediately felt a sense of normality returning - as if I were re-joining the rest of the human race for the first time in decades. I finally realised I was not helpless after all. Not only that, but the process empowered and motivated me to start sharing my new found hope and experiences with others too. The result was my story site and blog (and the hundreds of email conversations I have had with vitiligo friends all over the world ever since).
You may be reading this and thinking you have been disappointed too many times by false hopes and treatments that didn't work. I have certainly felt that way in the past. The approach that eventually worked for me has helped a lot of other people too but I don't suppose it works for everyone. Effective vitiligo treatments are not a one-size-fits-all. I know this myself because I tried several therapies in the past, including PUVA, which is proven to help some people but made absolutely no difference to my vitiligo at all. But I take the view that enough of us have proved that vitiligo can be reversed and that we no longer have to believe those doctors who tell us nothing can be done. We no longer have to feel hopeless and helpless. We can be proactive now, without having to wait for a miracle cure to be invented. There are lots of things we can do right away, like learning as much as we can about how our skin produces pigment, what other health conditions we might have that could be contributing to our vitiligo, avoiding environmental triggers, improving our diet and trying safe treatments that have worked for others.
Finally, supporting each other and contributing to vitiligo groups and research are also ways of breaking free from the sense of helplessness that so often accompanies this skin disorder. Vitiligo research projects and support organisations around the world often ask for the participation of vitiligo sufferers and their families in helping to develop treatments or improve available support for patients. I mentioned one of these on this blog a few months ago. It was a UK based trial - the "Hi-Light Vitiligo Trial" - designed by the Centre of Evidence Based Dermatology at the University of Nottingham to test the effectiveness of home-based light therapy with hand-held UVB phototherapy units. The same team at Nottingham has also been asking for feedback from people with vitiligo, or carers of children with vitiligo, to find out more about their experiences of looking for information or treatment for the condition. This involves answering a survey which will be used to raise the profile of vitiligo amongst health professionals, particularly GPs. The findings will also help to form plans for advertising the findings of the HI-Light study in the future. So, if you live in the UK and would like to contribute to this survey, there is still time to participate by clicking here – but only if you are quick. The deadline is this Sunday 13th March.
My name is Caroline.