Talking to Kids about Psoriasis
I have had psoriasis forever and have also lived forever (if you ask my kids). My eldest son is eight, he has seen me through two full strep flares. He knows the ups and downs of my disease well. My daughter is younger- she has a good idea but she frequently forgets the details she asks for. As a parent, I feel it is my job to hide from my children what they do not yet need to know. They don’t need to know about depression, and how it can manifest itself. But they do need to understand what is going on with mummy. I certainly haven’t nailed this, I'm 100% a work in progress, but sometimes it helps to know what other people are doing, so this is me.
What are the spots on your skin?
This can be hard to explain, but the answers can be a more natural evolution when they are your own kids. I start with something like "mummy's body is special because when something on the inside isn’t very happy, I have spots that show on the outside." I then reinforce this during everyday life- so when I get ill I might say, look at mummy spots, they are pinker today- I think it's because I’m getting ill. Then if they get itchy, I tell them my body must be getting busy killing the bad bugs. Then as I heal and the redness subsides the kids can follow that part of the journey too. I need them to know that a flare will always end, I need them not to be afraid.
Explaining psoriasis flares
I try to demonstrate control- I show the children I can make it better and worse. If I eat tomatoes, it goes redder and itches for 20 minutes, and then calms down. If I'm flaring, I show them that cold can take the heat out. Any part of the process can be controlled if we know how, and I feel it's important for them to know that. If you're struggling to explain what is happening, borrow a book from the library about how the body works, and use the content of the book as a trigger for discussion. The key here is to avoid bombarding your child with too much information, or words they do not understand. Let your child lead the conversation, it will unravel over time.
The "Mummys itchy now" protocol.
One thing I have found critical is to keep my kids in the loop. When I am really itchy, the kind of itchy where people are talking, and you don’t notice? When I am that itchy, I explain to my kids that mummy is itchy and that I need to deal with that. We have an unspoken protocol- my kids know that I can't deal with any bickering or breaking of crayons or any other minor but common parenting duty. They know I will either be outside cooling off my skin in the cold air or in my bedroom with all the windows open while insulating my core to prevent hypothermia. It's always cold outside where I live. They can come and see me to tell me things that happened in their day, or with genuine problems, but the small stuff needs to go to daddy. I used to deal with it on my own, but now if the kids are at home, and my itching is too much I call daddy to work from home. I need to teach them that it's O.K to ask for help. Communication here is vital because I am really snarky and snappy when I get this itchy and I need the children to understand that it's me, not them. 'Mummys itchy' is one phrase that tells them everything they need to know.
Will I get spots?
My children are not old enough to ask if they can get it. I am not sure how that conversation will go, I know my son is starting to understand percentages, so I might explain it to him regarding percentage likelihood and use it to chat about math too- it helps keep things focussed productively. So he can go away and think and then come back and ask more. That's my plan anyway...
If you have any tips on how you talk to your kids, I would love to hear them.
How often do you experience brain fog?