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Writing With A Chronic Illness

31/08/2017 14:08 BST | Updated 31/08/2017 14:08 BST

everybody

I'm an open person - ask me a question and I will give you an honest answer. But there are some things that I don't bring up, like my health.

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At a Derby Book Festival event recently, I mentioned that I gave up my job because of Chronic Fatigue Syndrome and this gave me more time to write. Someone asked, 'How do you manage to write with a chronic illness?' I said something bland like, 'Self-care... naps... eating well...' Two people thanked me for being candid about my illnesses and to tell me their own struggles with their health.

But I wasn't as honest as I could have been.

I didn't talk about how I get into cycles where I feel so ill I don't look after myself, which leads to me feeling worse and so begins the deep, dark, spiral of illness and depression. I didn't mention my crushing anxiety which has me not wanting to leave the house for days or how I get ratty with those around me, and how I become overwhelmed at the thought of doing simple tasks that others take for granted.

It got me thinking about why I don't talk about my health. Is it because I don't want to appear weak or be pitied? And the answer is - I'm embarrassed. I'm even embarrassed that I'm embarrassed. I feel like I'm to blame; that I'm always apologising for letting someone down; for cancelling at the last minute, for not being able to take the kids out on a bike ride.

Having a chronic illness can be lonely. My husband often takes the kids out without me because I'm either too ill or I need to rest. This week, I refused to miss out. We've been out every day as the​ summer holidays come to an end. My eldest (by four minutes) asked why I have 'bruises' around my eyes. I look terrible and feel even worse. Desperate fatigue means I find it difficult to lift my arms to wash my hair. It hurts to stand for as long as it takes the kettle to boil. But we made some memories this week so I think it's a price worth paying.

Catch me on a good day, and I'll tell you that chronic illness can be a gift. (And I don't mean one of those unwelcome gifts from your Gran which is going straight to the charity shop on Monday.) If I hadn't been signed off sick I wouldn't have read as much as I did, wouldn't have fallen in love with books all over again, and I wouldn't have considered writing a novel.

When I was signed off work there weren't many things I could do that wouldn't make me ill. Writing was my way of exploring the world without stepping foot outside my door. Adventures were only hampered by my imagination, not my body. I could use my brain when other muscles let me down. Even on days when I had serious brain fog, writing was a release - if nothing else, I was queen of synonyms because I could never remember the word I wanted.

I don't know how many writers are affected by chronic illnesses. I can name a couple of highly successful authors off the top of my head who have been open about their struggles with health. There's Sarah Perry, author of the award-winning Essex Serpent who has Graves' disease and Angela Clarke, author of three books in the Social Media Murder series who has a degenerative tissue disorder called Ehlers Danlos. I have heard both women speak at events and you would never know that anything was other than rosy in their lives but they struggle just like the rest of us - and they're not embarrassed to own it.

I wonder if writing is something that many of us would have relegated to 'hobby' status if it wasn't for the need to have something tangible to show, something we could be proud of when going 'out to work' was no longer an option.

I am doing what I love BECAUSE of Chronic Fatigue Syndrome not IN SPITE of it. We hear stories all the time about the medal-winning runner with asthma, the one-armed drummer, and though these stories are meant to inspire us, they can sometimes make us feel inadequate.

Take a look at the two photos in this article. The one at the top is an 'official' author photo. Look at her - she's a tough cookie. This is the person that the publicity department would have you believe wrote Sticks and Stones. Read a Psychological Thriller by her and you know you're in safe hands.

The one below... well, that's the story of my life. This is me in my comfy clothes about to embark on another round of editing without having a clue where to start. Many people portray a wildly different public persona to how they truly are. Whereas Clark Kent rips open his shirt to expose the famous symbol for Superman, my superhero outfit is a little snugglier and involves fluffy socks.

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So, to everyone out there achieving 'greatness' through illness - whether that be starting a new business, writing a novel, or binge-watching Netflix - fist bumps all round. You're not alone. We got this!

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

We'd love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line 'EveryBody'. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line 'EveryBody'.

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