At what age do you explain to your child that they have Vitiligo? Or do you wait for them to come home from school one day after one of the kids has perhaps asked questions about their skin?
I don’t ever really remember my parents telling me what Vitiligo was. I vividly remember the endless train journeys to Great Ormond Street Children’s Hospital in London and the play area in the waiting room that kept all the kids quiet until their names were called over the tannoy, but I don’t actually remember when I realised what I was going for or ever asking why I was going! Mum says I questioned my skin when I was around 6 years old. I’d come home from school and apparently one of the kids in my class had asked me what it was, to which I replied ‘I don’t know’…. because I genuinely had no idea. It was then she told me I had a skin condition called Vitiligo and that there was nothing wrong with me. That was the end of it. It was never a hot topic or spoken about again unless someone had brought it to my Mum’s attention….
As a parent, trying to get your head around Vitiligo or any condition for that matter, can be tough, especially when they are newly diagnosed. So with that in mind, how must it feel for a child to understand the reasons for their slightly unusual skin tone that makes them different from the other kids in the class? Here are the ways, from my own personal experience growing up, how you can help you child understand Vitiligo…
Explain to them what it is in simple terms
I know this must sound like I’m stating the obvious, but it can often be difficult trying to explain a condition to a child in simple terms if its not so simple. The key is, try not to over complicate things to quickly! Young children don’t need to understand the technicalities behind Vitiligo, so talking about it being an autoimmune disease and that the loss of pigment is due to the lack of melanin in the skin, isn’t necessary. A child friendly explanation could simply be ‘You have a condition called Vitiligo which means white patches appear on the skin’. All the other stuff can come later in life when they are old enough to understand. When my nephew, who is 8 has asked me what was wrong with my skin, I responded by saying ‘Auntie Nat has a skin condition. It just a little different to yours’, which he accepted and has never felt to ask me again since.
Show them stories with characters that have indifferences, including Vitiligo
Back when I was growing up, there were barely any black or mixed race characters in the children’s books I read, so there certainly wasn’t a Naomi or Natasha with Vitiligo! Looking back, I honestly believe this would have helped ‘normalise’ my skin and help me to see it in a positive light.
Now with books such as Skin Deep: A Childs Story and Snow White and The Seven Patches in which the lead character has Vitiligo, we are able to teach our children through story telling and show them that there are characters in every day life that represent them.
I know as a parent you will want to remain positive, but I also understand it can be difficult as you wonder how they are getting on in school or even panicking because you’re not sure how much your child’s Vitiligo will spread. Out of all those people your child comes into contact with, you’re likely the one that will comfort them through difficult times and reassure them if they do face any challenges. My parents always dressed me in shorts and t-shirts during the summer because they refused to have me think that I had something to hide. They always remained positive and hopeful during hospital visits, and didn’t let me think that Vitiligo would stop me from doing the things I loved, such as swimming.
Banish the Bullshit
Regardless of your skin colour, religious beliefs, gender or size there is always going to be that kid in the class that spouts negativity! Try and prepare your children for the obvious questions that may arise such as ‘What is it called’? ‘Can you catch it’? (I wish I could banish this question!) and ‘Were you born with it’?. Not only will this allow them to understand their condition, but it will also allow you to dispel any myths that are often associated with Vitiligo, such as it being contagious and stress being a key factor of its cause.
Since being a trustee at The Vitiligo Society, I often here from parents who have discovered patches on their child’s skin and are often unsure how to deal with their child’s changing skin. I cant stress enough how important it is for you to remain positive, even though their might be occasions when you want to shut the door and shed a tear because you’re not sure what it means in the long term. Try not to worry to much. In all the years I’ve had Vitiligo, I know that having a skin condition in the present time is probably the best time to be different because all around us unique conditions are being celebrated and body confidence has never been so powerful across social media in particular. Remain confident and hopeful for them because if they know you love and support them, chances are they’ll know everyone else will too…