….but we are all fabulous.
Today (25th June) is World Vitiligo Day (http://25june.org/).
For those of you who don’t know, vitiligo is a condition affecting 1% of the world’s population in which a lack or loss of melanin causes white patches to appear on the skin. The precise cause of vitiligo is uncertain in many cases. It can be inherited – if a close relative has vitiligo or a related autoimmune condition such as Type 1 diabetes or thyroid problems, your risk is increased. There is also some speculation that it can be triggered by stressful events and by skin trauma. There is no effective cure and as well as causing physical problems such as an increased risk of the affected skin burning in the sun, vitiligo can cause psychological problems such as depression.
Famously, Michael Jackson had the condition and more recently, the model Chantelle Winnie is a high profile and striking example of a person with vitiligo.
I also have vitiligo – in my case it started in my 40’s. I had some white patches on the back of one hand and gradually these spread so that I now have patches all over my body. My vitiligo progresses in fits and starts – it will be stable for a while but then I will notice some new white dots and these will then grow larger for a while until it settles again.
My left arm!
I have got used to the white patches now, used to the lingering glances I sometimes get from strangers and occasionally from friends and used to buying the factor 50 sun cream which I try to wear on my face and hands when I go out on sunny days to protect my skin. However, when I was first diagnosed I was quite distressed – I was in a new relationship and I had no real idea of how the vitiligo would progress – would my face be affected (it is increasingly but less noticeably than elsewhere so far) and would my new partner still want to be seen with me (thankfully, yes!)?
Unfortunately the dermatologist who diagnosed me lacked any element of empathy or any apparent awareness of the relevant psychological literature. She was rather brusque and told me to be grateful I wasn’t black since the condition is far more noticeable on dark skins. While this is objectively true, the lack of acknowledgement of my own experience left me with the impression that I was unusual or self-absorbed to be upset by the diagnosis.
In fact, even the briefest investigation into the condition reveals that the psychological aspects of the condition can be the most problematic. In one study 59% of participants reported an incident in the past 3 weeks in which their vitiligo had made them feel bad (Kent & Al’Abadie, 1996). In other research, more than 50% of patients reported that had been stared at and 16% had overheard rude remarks, such as “Yuck, what’s wrong with him?” or “People like that shouldn’t go out in public.” (Porter et al, 1986). Silvan (2004) reviews these and other findings which reveal the negative psychological sequelae that can occur with vitiligo. He also proposes that psychological conditions such as depression may themselves worsen the vitiligo. Whilst this point has no concrete biological evidence as yet, there is no doubt that the reverse is true: our skin condition plays a significant role in our psychological well-being.
Teenagers are humiliated by acne. Women wear foundation and use moisturisers, exfoliators and fake tan to make their skin look better. We blush when we are embarrassed. Older adults develop liver spots. The condition of our skin reflects whether we are dehydrated, hung-over, tired, ill, jaundiced. There is a whole beauty industry devoted to making our skin look younger, healthier, smoother and firmer. Imagine therefore what it is like against this background to have skin which looks as though it has been burned (before I had the condition I thought a female colleague had had an accident with acid), to have people wonder if what you have is contagious (it isn’t), to have overlong sideways looks cast at you by people who are curious but don’t want to ask.
To be honest, since my period of readjustment, I rarely feel emotionally troubled by the vitiligo. I have never heard any negative comments made about my skin and I am indeed lucky that my natural skin tone is not darker. I also feel fortunate that it didn’t appear until I was in my 40s at an age at which I am less concerned about what other people think than when I was younger. I am not in a career in which looks are especially important and so I do not feel that I have been discriminated against as a result of my condition unlike the 13% of patients reported by Porter et al (1986).
However, vitiligo is still characterised as a cosmetic condition and treated as such. But for those newly diagnosed, for those who are bullied, for those who are discriminated against and for anyone of any colour with the condition who has suffered emotionally as a result of it, this condition is more than just skin deep.
NHS information about the condition:
The UK Vitiligo Society: http://www.vitiligosociety.org.uk/
Facebook page: https://www.facebook.com/WorldVitiligoDay