Aware of vitiligo’s incurable nature, the potential for spread, the need for daily long-term treatment, and the possible future issue of people staring and/or other children bullying your child, you need to firstly come to terms with your own fears and concerns before confronting the inevitable and difficult task of explaining this skin disorder to a child. You might be fearful of your child’s reaction, and initially delay confronting this important conversation. It’s important however, to be open and honest to your child early, to allay fears and reduce the potential for anxiety to develop. That said, how then should a parent go about such a nerve wracking and heart-breaking task?
It is vital that you firstly speak to your child’s Dermatologist, privately and without your child present if necessary. Dr Google (the internet) whilst sprinkled with factual information, is unfortunately contaminated with misinformation. The internet has a habit of heightening one’s greatest fears and offering false hope, so speak to your child’s Dermatologist first, and often. Once armed with scientific facts, older brothers and sisters should be spoken to in advance of breaking the news to your child. The first conversation is often the hardest so sharing the news with other family members first can be helpful, and prepare you for task ahead.
What you explain and how much detail you provide to your child will off course depend on your child’s age and level of maturity. Rather than commit to a predetermined time of day, choose a moment when you and your child feel comfortable. When the time is right, remember you need to sound and behave as normal as possible. Showing fear or sadness only frightens children, creating stress, which they and their vitiligo do not need. Be honest and use simple language remembering that children often need to have information repeated to them more than once. Avoid words or phrases that make the situation sound desperate and without hope. For example, in explaining why your child’s skin has changed colour, saying “the skin cells that make your skin colour have become sick in some areas, and because of that they are not working properly” is preferred to “your skin cells are being attacked by your own body and are being destroyed (or dying)” Similarly when explaining treatment, whilst we know there is no cure, please remember that there is good treatment available and some patients respond extremely well, so rather than explaining “the Doctors can’t cure your skin problem but they are going to try some treatment” it might be more helpful to explain “Doctors don’t have an easy answer to your skin problem but they are going to start the best treatment they have which has helped a lot of others like you.”
When speaking to your child, don’t forget to explain simple things like vitiligo happened on its own, and nobody did anything to make it happen, and also that vitiligo is not contagious and people can’t catch it like a cold. You also need to emphasise that treatment takes time, and to work its best needs to be taken/undertaken regularly for up to a year.
Because we know that is some patient’s injury or trauma to the skin can trigger new patches of vitiligo, it is important to explain this to your child, making sure however not to prevent your child from leading a normal active life just like other children. In this regard, do not scare your child by suggesting “you can’t do sport anymore because it might spread your vitiligo” Instead allow and encourage your child to be as active as any other child but explain that “sometimes vitiligo can appear in skin that is injured or hurt so we need to be a little more careful. if your riding your skateboard or bike, wear your knee and elbow guards and helmet, and when playing soccer don’t forget your shin pads.”
The worse thing a parent can do for a child is to wrap in them in cotton wool and try to shield them from trauma to the skin or from the eyes of the world, in the hope that this will reduce the risk of vitiligo spreading, prevent social isolation and stop the ever-feared bullying at school. On the contrary, it is important to develop other skills in your child. Whether they become a good swimmer or runner, or are great at Maths or debating, these skills may buffer them against negative eyes and thoughts by allowing them to build a group of supportive protective friends and relationships.
As well as explaining the condition and treatment, if your child’s vitiligo is openly visible (face and hands) and particularly if your child is in later primary or early high school you will need to explain that other children and people may stare, not because they are being rude or deliberately mean, but because they are seeing something different and are trying to work out why? A bit like if we saw a giraffe with a rhinoceros horn we would stare and keep staring wondering why is that so, why is that different? Speaking to your child’s school and teachers to educate them on the condition may be helpful. Your child explaining to their friends why their skin is different is better than just letting people stare and wonder.
In spite of you best efforts, and depending on your child’s personality, age, extent and site of vitiligo, expect them to feel confused, afraid or guilty. Give them hugs and kisses and go about your normal routines to make them feel that nothing has changed except their skin colour. You still love him/her like before and family life is exactly as it was before and that’s what matters the most. Keeping a positive attitude helps every problem in life be it financial, relationship or health related so positive mental health can only help vitiligo.
Don’t let vitiligo dominate you and your child’s life. Push vitiligo aside, not life. Think of life as a 1000-piece puzzle with vitiligo being only one piece, the other 999 pieces must be appreciated. Remember, what happens to us may not be completely in our control, but how we handle it is entirely up to us!
Dr Phillip Artemi
The Vitiligo Centre Australia