I Want to Create a Generation of Chronic Illness Advocates

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I want to create a generation of chronic illness advocates. And in the meantime, understanding in our own homes.

I want to create a generation of chronic illness advocates

As someone who’s experienced chronic symptoms for most of my life, I didn’t have a sudden adjustment period that my children witnessed. It was all business as usual for me long before they entered the picture.

So I have had to figure out how to discuss it all with them.

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To support those conversations I wrote a book, My Mama Has Fibromyalgia. It’s a non-fiction children’s book explaining fibromyalgia in simple terms. There are a couple of cute story books talking about chronic pain for children. But my children are a bit like me. We need more detail.

By the time I realised that they were experiencing life with me anyway, and seeing how I have had to adapt to my symptoms, it was a bit late in the game.

I attempted to have a few chats with them, but without something practical to show them, it was difficult. So I created my book.

More than this, these children have the chance to grow up with an accepting mindset. Knowing that ableism is not OK. And there is a spectrum of abilities in this world.

Me holding My Mama Has Fibromyalgia book

Creating the first book

I wrote the book fairly quickly. And had my then 9 and 7-year-olds give me their feedback. My wonderful brother designed and formatted the book. I loaded it up into Amazon and ordered an author copy.

When I was finally able to read the physical book with my children it was such a profoundly emotional experience. They asked me some great questions. I felt heard.

My oldest told me that he thinks I am brave for managing the kids, the house, my part-time job, my blog and the chronic conditions.

The conversations it’s opened up have blown my mind. And having their understanding has really helped at times.

More than this, these children have the chance to grow up with an accepting mindset. Knowing that ableism is not OK. And there is a spectrum of abilities in this world.

When someone found out I wrote this book specifically for fibromyalgia, they said it would be so cool to have one for chronic pain.

And so I created My Mama Has Chronic Pain.

my mama has chronic pain book

But I sat on it for a little while because I experienced the old imposter syndrome. Who am I to publish a children’s book? I don’t have the funds to access a professional illustrator. It’s not good enough. So I didn’t do too much with it.

Then at a parent teacher interview my 7 year old’s teacher told me he talks often about how I am an author and write books. She invited me to send it in. So I did. He proudly read it to the class.

When I was at school for an event he brought a friend up to me, upon introducing me, the boy said, “I can’t believe you’re an author!”. It was very sweet.

And then I realised that they don’t care if I have a problem with second guessing myself. Or access to a professional illustrator. The book connected.

Next I’m working on My Mama Has ME/CFS. This is taking longer as my experience is deeply coloured by not finding out until a few years ago that I had it and so my experience is so thoroughly intertwined with fibromyalgia and endometriosis that it’s hard to tell where one ends and the other begins. I’ve purposely sought feedback from people for whom ME/CFS is their sole diagnosis.

The goal is to create understanding in our own homes. And to give us some ideas for how to discuss it.

I know I get a bit tongue tied when I meet someone who’s curious but don’t need the whole scientific speak. But to simply say chronic pain, chronic fatigue and insomnia (for fibromyalgia) is way understanding it.

A dream come true

It wasn’t the way I imagined this particular bucket list dream coming true. But it is a dream come true. Every time I publish a book, I am so excited. The excitement doesn’t wear off.

I can’t wait to share these next books and the journey with you. My wish is that they help you to have important conversations with your children and they then grow up to be chronic illness advocates.

Grab My Mama Has Chronic Pain here

i want to create a generation of chronic illness advocates
i want to create a generation of chronic illness advocates

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