A letter to children with rheumatoid arthritis 

Hey you. I see you, with your cheeky smile and wise eyes. First things first I want you know that everything is going to be ok. You will need to be brave a lot and learn to be strong, but you will be ok.

I expect lots of things are changing right now, you are up and down to the hospital lots and miss school. You probably have to take lots of medicines that make you feel sick and tired and have nurses poking you with their sharp scratchy sticks. You think about your friends and all the fun you think they are having and probably wish it would all just go away and things could just be normal again. They will be. You are just going to have to find a new normal my angel.

I was once your age you know. I was that sick child, like you, the one who was always ill. I spent lots of time staying in hospital without my mum as I got older and it was pretty scary. I could see that it upset my mum lots to have to leave me there so I tried my best to be brave. I made friends with the other sick children and talked to the nurses when I was sad. They were always very lovely and kind to me.

I found that after a while I could smile even when I had to stay in the hospital for lots of sleeps. I went to school in the hospital and that was annoying, you would think we could at least get out of school! It was good though, it gave me a chance to talk to other children and think about something else other than being afraid and poorly. I spent a lot of time in hospital when I was a child, reading and studying saved me. It made me feel normal.

I had visitors and that was good, the nurses still nagged me to rest and poked me with their sticks and I had to go in funny noisy machines a lot so they could look inside me, but I always had a book to escape into. I decided very quickly that just because I couldn’t walk and do the things I could do before, I could still do something. So I wrote stories, drew pictures and read endless books.

I was a kid way before computers, can you imagine that! So I made friends at my real school with people that understood my worries and that I couldn’t always join in, so we made new adventures that I could do. My mum was very brave and when I got old enough, she would let my friends go out with me on my crutches or in my wheelchair to the shops or park. It felt good to do normal things. Sometimes I joined in with their games or football or their dance routines even though it hurt. I would get told off, but it was worth it.

I know that right now it feels impossible that you will ever be brave enough or grow up to be old like me, but you will. You will find a way to be strong enough if you let the people that love you help. Tell them your worries and ask if there’s a way you can still join in even though you are sick. I remember my mum sneaking me out of hospital one night to go to a show, she did get the doctors permission but it felt really naughty creeping out and going on my crutches to do something I’d looked forward to, then sneaking back into my bed where the other kids had waited up to hear all about it.

There will be days when you just want to curl up and shut the world out, that’s fine too. Remember though that tomorrow is a new day with new possibilities and new adventures to be found. Try very hard not to worry about what the other kids think. I will let you into a secret, when they look at you in your chair or walking funny, they are thinking how brave you are, even the ones that can be unkind. They are just frightened as they know they aren’t as brave as you, brave enough to keep trying to go to school, brave enough to make new friends, brave enough to keep smiling. You are wonderfully,  beautifully brave, remember that.

I am now a grown up with four children myself! I studied hard and became a teacher and even when I was too sick to do that anymore I found something else. Now I write stories to try and help people like you and me, I also sing even though I cannot longer dance and I swim as I can no longer run. You’ve just gotta find that thing that makes you smile and say ‘but I can do this’.

You to will grow up one day and will be one of the most amazing people, I promise. You just need to let the people that love you very much, help you and take care of you until you get there- even then they will still be there when you need them. Here’s the thing that makes you very, very special: You will understand how it feels to be scared, lost and hurt. Because of that, you will be the kindest, bravest, strongest, most incredible grown up and that’s a rare and beautiful thing to be.

Be brave my lovely one,  now let me see that beautiful smile,

With love

K xxxx

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