Living with Vitiligo

A diagnosis of vitiligo can seem like a life sentence as the unpredictable course of the disease means no-one can be sure how it will progress and until a cure is found people with vitiligo must learn to live with it.  There are, of course, treatments that can improve the condition, and sometimes this improvement can last for many years.  But there is always the fear that the white patches may return and spread more widely than before.

Most people after they have been diagnosed experience a range of feelings and emotions including shock, denial, anger, fear, guilt, anxiety, isolation, depression and finally acceptance.  A lot of people never get to the last stage and many can become overwhelmed by low self esteem and lack of confidence.  Some people with vitiligo never really fulfil their potential and many children are teased and bullied with some reported cases of underachievement at school.

However, vitiligo need not prevent you from doing what you want in life, once you realise it does not have to take over your life and is only part of who you are.  Focusing on your good points and building up your self esteem will help to put vitiligo in perspective.  Self confidence, once achieved, should make it easier for you to deal with intrusive staring and rude remarks and go out in public without feeling ashamed or ugly.  Not many people can boost their confidence without help.  Although support from friends and family is essential you may find a course of counselling helpful. 

It is not surprising that people stare at the sight of vitiligo because it looks strange and they do not know what it is.  They may recoil because they are afraid of catching it.  Explaining what it is can help to dispel their fears but you are not obliged to talk about it.  You are entitled to choose how much or how little you discuss it, especially with strangers.  Be prepared with a few simple explanatory phrases.  “It is vitiligo, a condition that affects the pigment cells in my skin.  They are not functioning properly or are missing from my skin and that causes these white patches which can burn easily in the sun if I do not protect my skin . It is not life-threatening and it is not catching”.  Humour is another way of dealing with rude or insensitive remarks.  Try to have a few funny remarks up your sleeve to use when the occasion arises.

Having vitiligo is not a tragedy although the loss of your skin colour can also appear to threaten your racial identity if you have dark brown or black skin. The colour of your skin is not the only thing that makes you who you are.  Family background and upbringing, personality, education, cultural and religious beliefs, the country you live in, are more important in defining you as a person. You could say that having vitiligo is one way to show the stupidity of judging anyone by the colour of their skin.