recommended for vitiligo
My recent post about talking therapies prompted a very positive comment from one reader (thanks, Erin) who has derived significant benefit from undergoing Cognitive Behavioural Therapy (CBT). She says “…I have felt much better about my continually spreading vitiligo since doing cognitive behaviour therapy. I would highly recommend this to any vitiligo patient. A great resource is also Skin Deep written by Grossbart. Very very insightful …” (You can download a free copy of this book Skin Deep: A Mind/Body Program for Healthy Skin by Ted A. Grossbart, Ph.D. and Carl Sherman, Ph.D. here.)
Another #vitiligo sufferer in the UK who has used this therapy to her benefit is Maxine Whitton, former President of The Vitiligo Society and tireless advocate for people with this condition. She underwent nine months of CBT and believes it should be an integral part of any treatment protocol for people with skin disease. She says: "I was told to look in the mirror without wearing make-up and tell myself that although I had vitiligo, it was only a part of me and that I wasn't hideous. It gave me a sense of perspective and taught me to accept my appearance…”
So what exactly is CBT? It is a talking therapy that can help you manage your problems by changing the way you think and behave.
It cannot remove your problems (or, in this case, take away your vitiligo) but it can help you deal with them in a more positive way. It is based around the idea that your thoughts, feelings, physical sensations and actions are all interdependent and that negative thoughts and emotions can trap you in a vicious cycle.
CBT aims to help you halt this cycle by breaking down the problems that overwhelm you into smaller parts and showing you how to change these negative patterns to improve the way you feel.
A major difference between CBT and some better-known talking treatments is that it deals with your current problems rather than delving into issues from your past. It looks for practical ways to improve your state of mind that can then be practised on a daily basis to make you feel better.
If you live in the UK you may be able to get your GP to refer you for CBT on the NHS. If not, the cost of private therapy sessions varies, but it is usually £40-£100 per session. You will usually have a session with a therapist once a week or once every two weeks. The course of treatment will usually last for between 5 and 20 sessions, with each session lasting 30-60 minutes.
#Research into how CBT can help vitiligo sufferers feel more positive about their skin is encouraging: see this list of search results and this paper in particular.
I generally only recommend treatments and products that I have tried myself and found to work. But, whilst I have never used any kind of talking therapy myself for vitiligo or for anything else, it makes very good sense to me and, had such a treatment been available when my vitiligo was at its worst, I feel sure I would have tried it. It seems to me that one of the most distressing features of vitiligo is how isolating it can be, especially if you don’t have anyone in your family to talk to about it. Support groups and forums go a long way toward addressing this problem but the one-to-one therapy that CBT offers is obviously designed to deliver a more personalised benefit to the patient and to give the individual greater control over how they feel about their condition.
Without wanting to state the obvious, there are a lot of people on the planet: about 7 billion at the last count. Homo sapiens first walked the earth about 50,000 years ago and since then the Population Reference Bureau estimates that approximately 108 billion people have ever lived. That’s a mind-boggling statistic in itself but even more amazing is the fact that no two people are identical (not even twins)! In fact, the outer packaging of the human being is even more diverse than the brightly coloured paper you may be wrapping around your Christmas goodies this time of year. Like the billions of snowflakes that have ever fallen throughout history, we are all unique.
Not only are we all different shapes and sizes and have different body and facial features, but we are all different colours too. Different hair and eye colours and, of course, a wide variety of #skin-tones. Most healthy people don’t usually give this fact a second thought (unless we are either ignorant enough to be bigoted or unfortunate enough to be the victim of colour prejudice). But those of us who have a skin disorder that adversely affects our appearance need no reminding of the impact that our #colouring can have on the way that others perceive us… and also on the way we feel about ourselves.
Wikipedia tells us that human skin colour ranges in variety from the darkest brown to the lightest pinkish-white hues. Evidently, #pigmentation is the result of natural selection. It is thought to have evolved primarily to regulate the amount of ultraviolet radiation penetrating the skin so as to control its biochemical effects in the body. So, not surprisingly, there is a direct correlation between the geographic distribution of UV radiation and the distribution of indigenous #skin-pigmentation around the world. Areas that receive higher amounts of UV radiation, generally located closer to the equator, tend to have darker-skinned populations. Areas that are far from the tropics and closer to the poles have lower concentration of UV, which is reflected in lighter-skinned populations.
The most important substance determining the colour of a person’s skin is the pigment melanin. #Melanin is produced within the skin in cells called melanocytes and is the main determinant of the skin colour of darker-skinned humans. The skin colour of people with light skin, on the other hand is determined largely by the bluish-white connective tissue under the dermis and by the haemoglobin circulating in the veins within the dermis.
But the variations in human colouring are not as simple as that. There is the question of freckles and the relationship between eye, hair and skin colour to take into account too, not to mention the question of hair greying with age, all of which is too big a topic to get into in this post.
Then, of course, there is the vexed question of skin disorders that can affect skin colour. #Albinism, an inherited, genetic condition in which pigment is either totally absent or drastically reduced, is an extreme example. It can affect just the eyes or it can affect the eyes, skin and hair. Whilst albinism is rare in the western world, it is quite common in sub-Saharan Africa, where it has long been associated with #stigma and #superstition. One such belief is that albinism is the result of a white man having impregnated the mother or that the child is the ghost of a European colonist. Worse still, another superstition has developed to the effect that albino body parts are good-luck charms or possess some sort of magical powers. This superstition has resulted in over 100 albino murders in Tanzania, Burundi, and other parts of Africa in the past decade, committed by those wishing to cash in on this grisly and lucrative trade.
The social significance of differences in skin colour has varied across cultures and over time and is still an important issue in #India for example. There, pale skin is considered more attractive, while dark skin is associated with a lower class status, creating a massive market for skin whitening creams. There is also a correlation between fairer skin and higher-caste status in the Hindu social order. Bollywood actors and actresses famously tend to have light skin tones and Indian cinematographers often use graphics and intense lighting to achieve paler effects. Fair skin tones are also considered to be an asset in Indian marketing.
The #social impact of human colouring is not limited to the question of black versus white or dark versus light. It can relate to other aspects of a person’s colouring too. The stereotyping of blondes is well known. Which of us has not uttered the phrase “having a #blond moment” at some time? You may think this is harmless but surely it is all a matter of degrees. Redheads (often referred to pejoratively as“ginger”) have been viewed with suspicion and discriminated against as far back as the Middle Ages, when red hair and green eyes were thought to be the sign of a witch or some other supernatural being. Nowadays, discrimination can take the less deadly form of tiresome sterotyping (e.g. people with red hair have a fiery temper) or the odious and dangerous form of bullying.
Given the powerful social influence that colour has exerted in the past (and, sadly, still does today) it should come as no surprise that individuals with vitiligo (a condition which can, after all, result in two or even more contrasting skin tones on the same individual, as well as greying of the hair) often face social and cultural challenges. Depending on how marked the contrast is between an individual’s white patches and their unaffected skin, a sufferer in the western world may find themselves subject to unkind stares or even suspicion or revulsion from those who don’t understand what vitiligo (or leukoderma) is. For individuals in India, Africa or the Middle East the social and psychological repercussions of their pigment loss can be dire, imposing a significant psychological and financial burden and loss of marriage prospects.
It would be wonderful to think there might come a time when society would have as little regard for the packaging a human being comes in as it generally does for the colour and design of wrapping paper and focus instead on the wonderful gift inside. Sadly, this would seem still to be a long-term aspiration.
I started out this Christmas week to write a light-weight post and have ended up with anything but! So, before I get even heavier, I will leave you with some words from Seven Seconds by Youssou N'Dour and Neneh Cherry...
And when a child is born into this world
It has no concept
Of the tone of the skin he's living in
And there's a million voices
And there's a million voices
To tell you what she should be thinking
So you better sober up for just a second
Festive Blessings to people of all colours :)
Summer isn't the only time of year we bare our skin...
The patchy pigment loss that vitiligo sufferers contend with on a daily basis affects some people more profoundly than others. The severity of the condition, as well as the #psychological mind-set of the individual, are both obvious factors that tend to feature in #quality-of-life research.
What may not be quite as obvious is the fact that the negative impact of vitiligo (or #leukoderma) can be quite seasonal.
As a young child, I loved the summer holidays. Like most kids, I looked forward to being off school, enjoying warm, lazy days, picnics, swimming and climbing trees with my other tomboy friends. I can remember one summer, when I was only about 11 or 12, wanting to have the sort of cut-off cotton top that was in vogue at the time. My mother, perhaps not surprisingly, didn’t feel it was appropriate for a girl of my age to go around showing off her bare midriff to all and sundry! But the reason I was so keen on the idea of adopting this fashion was because I was already aware that vitiligo was progressive and I could see the very early tell-tale signs that my waist would be next on the list of body parts to lose pigment. So it was a case of “let’s flaunt it while there is still time!”
As the pigment loss spread, the summer months became more of a trial to me than a pleasure and I used to greet the first cold weather of autumn with relief because it meant I could cover up the offending patches with warm clothing and not have to worry about camouflaging them with cosmetics or avoiding social situations that involved revealing my skin to the gaze of others.
Once I reached my teens and 20’s though, even the winter months – especially the December party season - presented me with anxieties because I longed to wear the slinky, skimpy LBDs that my friends were wearing. Self-tans were my best friend then. But applying them effectively became more and more of a tedious exercise in colouring-in-without-going-over-the-lines and put a major damper on what should have been a simple, carefree pleasure – going out socialising and dancing. Like a lot of young women, I had a keen interest in fashion and would have loved to wear outfits that showed a bit of flesh here and there. But, by the time most of my body and face were affected by vitiligo, even #MichaelJackson’s costume designers would have struggled to create garments that only allowed for glimpses of normal skin!
Since men are generally less obsessed with fashion (a sweeping statement, I know!) than women and less likely to want to show off their arms, legs or any other expanses of skin (unless on the beach or playing sport) it is not surprising that anxiety levels among men with vitiligo are lower on average. Concerns over “bearing all” also diminish with age, reflecting the fact that older people generally find themselves in fewer social situations where they would feel peer pressure to expose their skin and presumably this also reflects the fact that older people are probably more philosophical about the whole issue of personal appearance than younger ones. My own experience definitely bears this out: even before I started to repigment (at the age of about 50) I had become a lot mellower about having vitiligo.
Now, in my mid-50’s and almost completely repigmented, I am no longer an age or a shape that lends itself to skimpy outfits (God forbid!) but I don’t mind at all that my recovery came too late for me to have the carefree relationship with fashion that I would have liked as a young woman. I believe I have become wiser as a result and I am just extremely grateful that I can now wear pretty much whatever I want without having to go through the old mental tick-list (does it have sleeves… how long is the skirt… how high is the neckline, etc.?) or spend hours applying camouflage to the jigsaw puzzle that was once my skin.
So, here we are in December once again and the party season is in full swing. Enjoy it - even if your LBD does have to have full-length sleeves and tanning your legs seems to take an age! However widespread your vitiligo is, whatever your age or gender, and whatever your current feelings about your white patches are, take it from one who knows - it is always too soon to despair because you don't know what improvements the next day, or next year, can bring.
I wish you a very happy festive season, peace of mind, and the hope of healthier skin in the New Year :)
Raising awareness of this misunderstood skin condition is not part of a celebrity's job description but it can be a big help.
Most sources of information on the subject estimate that the percentage of the general population worldwide that has #vitiligo is somewhere between 0.5% and 2%. Whilst this does not exactly make it a common condition (like eczema, for example, which reportedly affects approximately 10 – 20% of the population) it does mean that approximately one person in every hundred we meet has it. So the fact that many people have still never even heard the terms vitiligo or #leukoderma is surprising. I believe that the main reason for this widespread ignorance is that – unlike more common skin conditions such as acne, psoriasis or eczema – vitiligo tends to undermine a person’s sense of ethnic identity, and even their sense of being a normal human being in a way that the more widely known skin conditions don’t. The loss of skin colour, for various psychological, historical and cultural reasons, is still (unbelievable though it may seem in the 21st century) a source of shame, embarrassment and stigmatisation for some and is therefore something they often prefer to keep, literally, under wraps.
The incidence of vitiligo is not thought to vary according to race or gender and the only known environmental factor that can sometimes skew the expected statistics relates to individuals whose work brings them into regular or prolonged contact with certain chemicals that can cause pigment loss (known as occupational vitiligo or chemical leukoderma). Other than that, vitiligo affects doctors, salespeople, teachers, gardeners, road sweepers, executives and shopkeepers alike. So it should come as no surprise that celebrities are afflicted by it just the same as us every-day folk! I suppose the reason it comes as a slight surprise all the same is because the cult of the celebrity has us half-believing that famous people lead charmed lives and that their wealth and influence are enough to fix most problems that come their way. Of course the all too frequent news that this or that household name has succumbed to cancer or heart disease reminds us that this is not the case. But we rarely get to hear about the non-life-threatening diseases that plague the glitterati.
#MichaelJackson is the first – and almost only - famous name that springs to mind in the context of vitiligo (and what better example could there be of the fact that this skin condition is no respecter of wealth or fame?). But I still found myself saying aloud “well, who’d have thought?!” when I read recently that other famous vitiligo sufferers reputedly include Dudley Moore (like M.J., much loved and sadly missed), Richard Hammond (of Top Gear fame) and legendary American comedy actor Steve Martin (perhaps this explains his trademark combination of dark eyebrows and startlingly white hair?). Of course, there is absolutely no reason why I should be surprised by these revelations, except in so much as all these individuals chose a profession that put them firmly in the public eye and all of them present an unselfconscious and extrovert image which can seem foreign to those of us who have lived our lives hiding our white patches from the gaze of others.
Of course, there are many thousands of #celebrities out there in Tinsel-Land (many millions, if you include those who are no longer with us) so – based on the known percentages - a considerable number of them must be vitiligo sufferers. But, like most of us with this condition, they either conceal it or simply don’t consider it to be relevant to their work, which is fair enough.
No one to date has done more to raise awareness of vitiligo than the King of Pop himself. But I have always believed that Michael Jackson’s quirky behaviours, obsessive preoccupation with privacy and his progressive shyness, when not actually performing on stage, were all a result of his changing appearance from black to white. I can only imagine the psychological impact that trying to hide this progressive pigment loss must have had on someone whose iconic public image must have become increasingly impossible to live up to. The impression I am left with when I look at his interviews and comments on the subject is that of a reluctant vitiligo ambassador, forced into the open by the misguided and hurtful accusations of critics who claimed that he was deliberately bleaching his skin because he was ashamed of his Afro-American heritage.
I certainly do not blame M.J. for his reluctance. Anyone who has suffered from any type of disfigurement will know the sense of indignation and, dare I say, violation even, that you feel when another human being stares at you, judges you or makes unkind remarks about your appearance. And, just because a person whose occupation places them in a position of influence happens to have vitiligo – or any other condition – does not mean that they are morally obligated to take up a banner to champion that cause. I believe it took great courage for Michael Jackson to confront his vitiligo in public but my guess is that he only did so because it was the lesser of two evils, the other one being to allow malicious and defamatory rumours about him to go unchallenged.
However, there are other public figures who have deliberately (and no less courageously) used their celebrity to raise awareness of vitiligo in a much more proactive and positive way. For example, I seem to remember that Mike Grady (“Barry” in Last of the Summer Wine) was happy to talk about his vitiligo some years ago and became a patron of the Vitiligo Society in the UK. TV personality Yvette Fielding (of Most Haunted fame) bravely bared all on Blue Peter when she was a 17 year old presenter on the children’s TV show in order to show audiences what vitiligo looked like. Not only that, but she recently gave an interview in which she talks about how she inherited the condition from her mother and was later also diagnosed with Graves’ disease, an autoimmune thyroid condition sometimes associated with vitiligo. She talks about her loss of skin pigment (which was 100% by the age of 21) and the challenges that this, and her other symptoms, present in her daily life. Given that her chosen career is one which demands such high standards of personal appearance and stamina in the face of often tiring and stressful schedules, her candour and courage are inspiring.
The American newscaster Lee Thomas is another example of someone in the public eye who was brave enough to show his white patches to the world.
He first revealed to TV audiences in 2005 that he had widespread vitiligo and went on to tell his story in a memoir entitled Turning White. This led to his becoming a willing advocate for vitiligo patients, starting a support group and becoming a motivational speaker and sharing his story around the world. Happily, he has enjoyed some significant re-pigmentation but I know from my own personal experience of recovery that, although this will have been cause for great celebration, it will not have lessened his desire to help others who have not been so fortunate.
In today’s airbrushed, over-produced, celebrity-hyped world of glossy unreality, it is a breath of fresh air whenever a member of that untouchable establishment openly shares their vulnerabilities with the public. Like it or not (and I confess I don’t particularly) celebrity equals influence in this age of instant communication. I’m not saying that this baring of body and soul should be compulsory: famous people are entitled to privacy just like the rest of us. But perhaps, if more of the one in every hundred celebrities that have vitiligo were to make the fact known, this not-so-very-rare skin condition might no longer be so misunderstood and under-represented.
A vitiligo blogger since 2011. My name is Caroline. I had vitiligo for nearly 50 years before finding an effective treatment. I created this blog to share my experiences with others affected by this skin condition.