Living with a visible difference – talking to your child

Talking openly and honestly about appearance from an early age will help your child to feel accepted and valued and build his/her self-esteem. If you can find the words to talk about your child’s ichthyosis, you can:

Prepare him/her for handling people’s inevitable natural  curiosity about their appearance with confidence allay unnecessary fears that come about from not talking about appearance help him/her see that their ichthyosis is only one part of them (so if they get negative comments about their appearance they are more likely to be able to discard these because they have positive images and beliefs about themselves) help him/her share their feelings around their appearance and medical condition.

The ideas below can help you develop ways of talking not only to your child but also to siblings (who may also be asked about their brother or sister), friends and other children.

Knowing how to talk about a medical condition or a child’s appearance can be tricky. At first having a whole sentence or explanation may be hard or feel uncomfortable. You could try by just giving it a name.

“It’s called ichthyosis.” or
“It’s just the way your skin is.”

It is helpful to start developing ways to talk about appearance using descriptive words that describe how the condition affects the way the skin looks. Think about the colour, shape and texture of your child’s skin (e.g. red, itchy, sore, flaky, uneven, swollen, patchy). Try to use words that do not have a judgement attached (such as ‘bad’). Choose what feels comfortable for you and your family and build a sentence around it e.g. “I am putting cream on your dry skin.”

Practise using these words and sentences before you start using them with your child. Remember children also learn a lot from our body language and tone of voice too. Portraying calmness and comfortableness, when touching, talking about or looking at a child’s skin, shows children it’s OK to talk about it. Children get used to hearing medical names early on so do not be afraid to name your child’s medical condition.

There are many daily activities that can provide opportunities to talk about appearance: questions about being a baby, looking at photos, naming parts of the body, bath time, during or after story time etc.

As your child grows older they may have questions and you may need to sit down for short periods of time to talk about it. Choose a time when your child is in a receptive mood. Make sure you have their full attention. If you can, prepare yourself for what you would like to say and think about what s/he might want to ask. You may be surprised by the questions your child asks.

Some parents put together a short story about their child’s life giving simple explanations about the condition, appearance, any operations and other important events (e.g. birth of a sibling, birthday party, special holiday). It is helpful to include current information about your child describing what s/he likes doing, what s/he is good at and some of his/her favourite things or places.

Experiencing a variety of feelings including anger, sadness and irritation (and many more) is part of life and children need to learn how to name these feelings, talk about them, respond to them and express them appropriately. You can start by naming feelings in your child and yourself:

“You are so happy today.”

Then, link this feeling to your child’s behaviour, body language and facial expressions so that he learns how to identify and express emotion:

“You seem really mad. You are stamping your feet and shouting. I know you don’t want to do what Mummy says.”

This then helps them articulate when they feel happy or unhappy about anything including their appearance, and it shows you are open to hearing and recognising their feelings.

It is important to give children the opportunity to express how they feel about their appearance. If you hear your child say, “I hate my skin”, let him/her know this is OK as we all have parts of us we do not like. S/he may well realise that this cannot be changed but it will be a relief to be able to share this with someone s/he trusts and is open to listening. S/he may even ask you what you don’t like about yourself!

Ask him what it is s/he doesn’t like about his/her skin rather than why questions as s/he may not know how to answer these.  S/he may have heard somebody say something about his/her skin or there may be a very practical reason, e.g. it means I have to leave the classroom to put cream on.

Young people often tell us that well meaning adults say things like “Looks aren’t important” or “It’s what is on the inside that counts” but for them this may seem dismissive. At their age it can feel like the outside is all that matters. It’s better to avoid these statements – we all want to feel good on the outside too! If you compliment them on their appearance and they rebuff this with comments such as “you’re my mum you’re supposed to say that”, don’t worry, be reassured as your positive comments on a continued basis do matter and do help.

Remember there is so much more to your child that makes him unique and loveable as well as similar to others. It is important to mention that they might look different but that they also have lots in common with other children. Be specific and name these commonalities (e.g. likes football, hates maths, can read and write, loves playing at break time).

You can contact Changing Faces on 0845 4500 275 or email info@changingfaces.org.uk for professional support, information and advice on this issue as well as handling other people’s reactions, managing your own feelings, building children’s confidence, difficulties at school etc.

iFace is a website by Changing Faces by young people for young people aged 11-21 to discuss disfigurement, give and get advice and share personal stories.  Don’t like the word ‘disfigurement’? Perhaps you think it is a negative word or it doesn’t apply to you.  It is used on the website because it is easily understood by everyone.  It is also a legal term and is used in Acts of Parliament to protect the rights of people who have disfigurements.  You might have other words you’d rather use such as ‘visible difference’, or ‘my condition’.  Just use the words that you are comfortable with.

Changing Faces has extensive experience in supporting adults who have disfigurements. They can offer you advice on handling different social situations as well as helping you develop your self-esteem and gain in self-confidence.

For more information visit Changing Faces and/or iFace