One thing I can’t seem to find is a resource offering advice on how to cope emotionally while living with Ichthyosis. There is a lot of fundraising money for research and a big focus on raising awareness, which is GREAT, but it’s hard to find any tangible ideas for children, young adults and adults to manage their condition beyond the physical. There is a lot of VITAL information about how to maintain the skin and other parts of the body, but maintaining mental health is just as important. The social reactions we receive and emotional impact of living with Ichthyosis can be wearing. This is one reason we need to move past raising awareness – to support the people actually affected. To equip us with skills to take us through our lives.

Last year at the inaugural Australian Ichthyosis Meet, the attendees workshopped some great coping strategies. Most of the suggestions were initiated by children with Ichthyosis. This is SO good – I love that this young generation can provide peer support to others living with the condition – children and adults of all ages, and with a range of conditions, and parents too. A lot of this is pretty useful life advice, whether you have Ichthyosis or not.

It makes me smile to reflect on what a fun time the attendees had – and that children and adults were equal contributors. This is the utmost demonstration of leadership.

Here is their advice – verbatim and gorgeous:

How do I respond to comments and stares?

• When people stare, I just keep walking, but if someone asks if I’m sunburnt, I just tell them I have a skin condition.
• I smile at the person and tell them I have skin conditions and end the conversation
• I say “No see I was born with this skin disorder called Ichthyosis”. Also I ignore these stares. Sometimes the best thing to do is just keep going and ignore it.
• Educate people about the condition
• Raise awareness
• By being approachable – eg – tell kids when they ask us, correct people if they assume it’s sunburn
• Say “there’s nothing wrong with me, what’s wrong with you?”
• Try brief explanation and walk away
• Use a business card with information about my condition on it
• Ignore it

• I think “I am better than them because I don’t stare and make comments about people”.
• Ignore
• Walk away
• Tell a teacher
• Be nice
• Invite the child to play
• Be strong and stand up tall
• Be proud
• Just say hello
• Smile
• Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly.
• Have a happy list
• Laugh
• Dance

• Have fun – jump on a trampoline and play with friends
• Being unique
• Have mummy cuddles
• Playing with pets
• Funny jokes
• Quiet time with myself
• Go to events like the Australian Ichthyosis Meet – make new friends
• Watch favourite shows
• Play video games
• Swim
• Appreciate a nice teacher
• Be brave
• Have pillow fights
• Do arts and crafts
• Doing thing I’m good at like netball and dancing

How can I feel good about myself when things get me down?

• Have a laugh
• Exercise
• Guide of concern
• Think about what I can influence?
• Gym and friends
• Gardening and cleaning
• Being a social butterfly
• Go shopping and buy really expensive things
• Get on the phone and vent and vent and vent to my best friend
• Sleep
• Laughter
• Going out with friends and having a good night out
• Being around people who you know will listen and support you.
• When I’m upset I go for a scooter ride or motorcross
• Wash my hair – because I love my hair
• Being positive
• Reflect on how far we’ve come
• Being able to communicate with people who understand
• Knowing you’re not alone
• Look on the bright side
• Eat chocolate
• Go outside and play
• Soccer
• Read a book
• Coffee with friends
• Quiet time
• Travel to tropical places
• Watch movies in bed
• Watch soccer
• Draw
• Take time for yourself
• Give yourself unconditional love
• Talk to friends and family
• Facebook – sharing and understanding
• Know that I am not alone
• Spending quality time with the kids – kicking the footy or playing cricket
• Do things I enjoy
• Look at photos of my kids
• Play with a friend

It’s also so important to have access to a counsellor or psychologist in addition to your/your child’s dermatologist – to support the person affected by Ichthyosis and also the people caring for them. Changing Faces and YP Face It are also great resources for supporting the emotional impacts of appearance diversity.

Have you got any ideas to cope with the emotional aspects of Ichthyosis?