FEATURE Looking unusual: what it’s like and how skin camouflage can help

BY JAMES PARTRIDGE

ppearance matters, nowadays more than ever. We live in a global culture where a smooth, Ablemish-free and consistent complexion, symmetrical features and perfect teeth are highly prized and believed to be the passport to happiness and success. If you are born with or acquire some kind of unusual-looking face, hands or body, living in such a culture can be extremely difficult. You may fear that your unusual features place you at a disadvantage and condition how you are seen by others too. This article takes the perspective of what ‘you’ – you as a patient and the health professionals who care for you – can do to address and cope with this reality – and in particular how you might find cosmetic camouflage creams valuable. It is written for a health professional magazine but deliberately written from the perspective of ‘you’, the patient – and perhaps more importantly, of you, the citizen, and the parent or carer of a child or adolescent.

Why you might look unusual There are many reasons why you might look unusual – and in medical parlance, these are often grouped together under uncomfortable headings like ‘facial deformity’ or ‘congenital malformation’. A Changing Faces skin camouflage practitioner shows a client how to apply the creams (photo courtesy of Changing Faces). You’d do well to avoid using those terms about your own condition or your child’s From birth: • Facial paralysis after Bell’s palsy, because they are stigmatising terms and • Birthmarks like port wine stains stroke or cancer treatment there’s no need to add to your challenge. • Cleft lips and / or palates • Eye conditions including squint and It would also be helpful if clinical teams • Cranio-facial conditions and rare loss of an eye. stopped using them ‘to your face’ – even conditions like neurofibromatosis if they continue to do so in clinical or (Nf). So you are not alone – although you academic discussions. may never have met anyone with one The fact is that you may have been During life: of these other conditions – or, if you born with, or acquired during your life, a • Scarring, fractures and amputations have, you may have thought them on the medical condition or had treatment for from accidents, violence and warfare margins of society and never imagined a condition which has left your face or • Cancer treatments like mastectomy that you might have an unusual face or body looking different to the norm and or ones causing the need for facial body like them one day. / or perhaps not moving or functioning prosthetics These conditions all have aesthetic normally either. Here’s a list of the • Skin conditions such as eczema, effects. They make your appearance possible reasons: , or psoriasis stand out from the crowd. For

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convenience and in order to argue everyday social encounters become for better services and fairness too, very challenging and looking unusual Changing Faces and other charities often brings with it being stared at often refer to them collectively as intrusively, avoided, asked curious ‘disfigurements’ or ‘visible or facial questions, patronised, called names, differences’. But as far as you are and worse – being ridiculed or concerned you have a condition or the rejected. effects of treatment for it. • Medical uncertainty: you have In my case, as you can see, I have the become a patient in an unfamiliar on my face (and hands and body) world with a strange language and from severe burns (covering about 40% customs and you may become of my body) for which I was treated by dependent on and grateful to many different medical professionals – particular clinicians. Understanding primarily burns and plastic surgeons. what’s happened to you and making Interestingly, once you see that there decisions about potential treatments are many different reasons for looking can be problematic. unusual, you’ll realise that you have You may also find it reassuring to know some common ground with people with that these effects have been found to other conditions. You may have very be common in people whatever the different conditions but the aesthetic severity or extent of their disfigurement. effects are similar. So too, you may be What may appear to be relatively minor surprised to hear, is the emotional and blemishes can have serious emotional social impact. effects especially if the scars or unusual I recall talking to a man with a cleft features are in what is known as the lip and palate and a woman who’d had ‘communications triangle’, from the a facial cancer operation in my plastic corners of your eyes to the tip of your surgery ward years ago and we came to Hannah and her mother, Allison chin. realise that the challenges we were all (photo courtesy of Changing Faces). The good news, however, is that going through, emotionally and in our many people do adjust successfully to everyday lives, were remarkably alike. unusual face is associated with being these challenges – some do so entirely But, and this can be very frustrating, nasty, mean, evil, criminal or just plain by their own actions and quite quickly the professionals who care for you, unintelligent. That’s a rather prevalent while others benefit from professional may not realise this reality – and they view across the planet – a stereotype help. But too many people do not adjust may not even ask you questions about which, sadly, Hollywood continues to quickly and, because they believe there your psychological state or your social promote in its lazy casting of villains is no professional help available, suffer confidence (what I’ll refer to as ‘psycho- as in Disney’s The Lone Ranger or the in silence. social effects’). This would be a pity and portrayal of the Orcs in the blockbuster What can promote your successful an error because once your medical Lord of the Rings and Hobbit films. adjustment? Research and Changing treatment has been completed and you Tolkein, the author of those wonderful Faces’ experience over more than 20 are discharged, it will be these effects stories, never mentioned that the Orcs years has established that adjustment that determine how well you adjust to had scars at any time but it’s an easy way is enhanced if people like you have or do your altered or unusual looks. of marking them out as the bad guys. the following: Second, you may well believe that • FINDING OUT: You find out what The psycho-social impact of surgeons are magicians and can rebuild medicine, surgery and other looking unusual your missing fingers, remove the scars treatments such as skin camouflage Wherever you live in today’s world, you or reanimate your face. Reconstructive can offer and decide what’s right for are likely to be bombarded by visual surgery, laser therapy and other modern you. imagery of ‘good looks’ and how they medicine are indeed remarkable in what • ATTITUDE: You and your family make your life better. It’s an association they can achieve today but they all have develop positive attitudes and which you may well have taken for aesthetic limits. Your injury or birthmark beliefs about the future, quashing granted, personally or as a parent. After may not be completely removable. the prevailing pessimism about your all, there are very few successful role So what are you likely to experience, prospects if you look unusual. models or celebrities with unusual faces, psychologically and socially, as a result • COPING: You come to terms with facial disfigurements. of looking unusual? Three key impacts your feelings and that may require But now you have an unusual face can be identified and are confirmed by some outside help. (or body), you will have to reflect on research: • EXCHANGING: You discover you are whether you still believe good looks • Intra-personal: inside, you might not alone with your condition and = success. It’s an equation which is feel a mixture of grief at the loss of you may benefit from meeting others endorsed by the corporate and celebrity your identity, anger, loneliness and in the same boat. world, but please note: Hollywood depression. This is not surprising and • SOCIAL SKILLS: You learn the social and Bollywood marriages don’t always is normal because your appearance skills to manage other people’s survive. has probably been important to your various reactions to your unusual And there are two other beliefs which self-esteem and a significant part of appearance. you also need to become conscious of: your self-image. Changing Faces has developed a wide first, the idea that having a scarred or • Inter-personal: you will find that range of help to enable you to face up to

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these challenges. Our Changing Faces References Practitioners are professionally trained 1. Saul K, Thistlethwaite JE. A patient’s journey: Facial disfigurement. BMJ 2011;343:d5203. and on call to provide it, under the 2. McMichael L. Practice Pointer: Skin Camouflage. auspices of our FACES package (see our “The best aspects were BMJ 2012;344:d7921. website https://www.changingfaces. 3. Holme SA, Beattie PE, Fleming CJ. Epidemiology giving me camouflage and Health Services Research: Cosmetic org.uk/Adults and https://www. camouflage advice improves quality of life.British changingfaces.org.uk/Children-and- products available on Journal of 2002;147:946-9. Families). And they have produced Further reading easy-to-read self-help guides that are prescription to cover Changing Faces. Face Equality for Patients with available online. But the important Disfiguring Conditions: How health and social care thing to realise is that no single solution my , the ease of professionals can support and empower. 2009. Accessed from https://www.changingfaces.org.uk/Health-Care- is right for everyone. applying the products Professionals/Publications/ For-health-professional Finding out about your and the fantastic effect Kent G. Testing a model of disfigurement: effects of a skin camouflage service on well-being and appearance condition and skin camouflage anxiety. Psychology and Health 2002;17(3):377-86. Whatever your condition, it is important it has. People look at Khanche S. Changing Faces: Exploring the use of Skin to learn more about it, its likely me now when they Camouflage,Dermatological Nursing 2012;11(4):44-7. prognosis and discuss all the treatment Lansdown R, Rumsey N, Bradbury E, et al. (Eds.). options – and keep doing so over time talk to me, not my scar. Visibly different: Coping with disfigurement. Oxford, UK: so you are (more) in control and can Butterworth-Heinemann; 1997. explain it fully (if necessary) to others Excellent.” Partridge J. Changing Faces: the Challenge of Facial Disfigurement. London, UK: Penguin and Changing too. Faces; 1990 and 2012. Your clinical team may provide Rumsey N, Harcourt D (Eds). The Oxford Handbook of the the UK’s largest provider of skin information but make sure that it is Psychology of Appearance. Oxford, UK: OUP; 2012. realistic information relevant to you. camouflage advice. Other providers You may also use the internet but include private cosmetic camouflage practices and Look Good, Feel Better, a beware – website information can be TAKE HOME MESSAGE very unreliable so it is worth asking charity for women with cancer. your clinicians if they recommend a We have 200 trained volunteers • There are many causes of particular source. Which, hopefully, working in 140+ NHS clinics and ‘disfigurement’ from birth and they have screened and decided is the community settings offering one-hour during life. best. appointments to around 6000 patients / clients annually who are referred to • The aesthetic effects are similar – One type of treatment which you (or and so are the psychosocial effects. your clinical team) may not know about the service primarily by dermatologists, is the application of skin camouflage surgeons and GPs. The training is • Clinical teams need to recognise, creams. Especially if you have a accredited by the Royal College of assess and address these. birthmark, scarring (including after Nursing and the Vocational Training • Changing Faces offers emotional self-harm), acne, rosacea, vitiligo, skin Charitable Trust. You can find out more and practical help through its discoloration and other skin conditions. by visiting https://www.changingfaces. practitioners and online. If your unusual feature can be org.uk/Skin-Camouflage concealed, you might be amazed at how But does skin camouflage really • Skin camouflage creams can be effective the creams can be in giving you work? Could it be for you? The evidence, very effective in giving people confidence to go into ‘dreaded’ social although limited in scientific research confidence. situations. Some people say they have terms, is convincing [1-3]. Patients are got back their ‘anonymity’ or ability to very satisfied with the advice given blend into the crowd. and say it raises their self-esteem and There is now a wide range of these confidence, their self-coping skills creams on the market; in the UK, 130 and ability to live independently. of them can be prescribed by your GP. Seeing their patients’ experience, Used skilfully – and you are well advised health professionals believe it reduces to get expert advice on colour matching patients’ future demands on GPs and James Partridge, and application – they can significantly other services (e.g. mental health). So OBE, DSc (Hon), FRCSEd (Hon), Founder and Chief Executive reduce the appearance of visible what’s good for the NHS may be good for you too: of Changing Faces marks, scars and discoloration on your www.changingfaces.org.uk skin. Not only are they aesthetically As for any treatment, the risks and benefits need to be weighed up. E: james.partridge effective but they provide long-lasting, @changingfaces.org.uk waterproof cover. Camouflage can become a crutch. Some wear it all day every day. But if Declaration of competing In 2011-12, Changing Faces took over interests: None declared. the unique Skin Camouflage Service used carefully and judiciously, it can be from the British Red Cross, becoming liberating.

pmfa news | OCTOBER/NOVEMBER 2014 | VOL 2 NO 1 | www.pmfanews.com