Why did I write it? ​

There are hundreds of millions of people across the world who are struggling with long-term (chronic) illness. They are one of the most overlooked and vulnerable groups in society, who in addition to their health challenges can face unfair criticism, accusations of faking, prejudice and stigma. I am one of them. 

 

If you don’t know my story you can read about it on my Fundraising page.

 

Though every person’s experience will be different, there are common themes that chime with familiarity for people with long-term illnesses: loneliness, a sense of isolation, helplessness, hopelessness, loss of control over one’s life, loss of independence, feeling useless or forgotten about, not feeling believed or listened toand stigmatisation. You only have to read a news article on the topic or have a dig around online to see these themes coming through. And for every rare and astonishing success story of someone who has ‘beaten the odds’ and ‘overcome the impossible’, there are many more people living lives that offer them little to look forward to. 

 

I have fought my way back from almost total incapacitation and learned how to LIVE with long-term illness. Living isn’t just about your heart beating or taking a breath. It’s about feeling alive, having a sense of purpose, having some level of contentment and fulfilment, about thinking there’s a point to your existence. My way of LIVING has included returning to my career in HR, as well as becoming a published author of seven novels, a children’s book and now this one. Part of my ‘recovery’ has come from medical interventions and medication, but a significant aspect has been to do with how I’ve dealt with my illness and taken the reins with my situation. 

 

I am not someone who has ‘beaten the odds’. I still live with the limitations of my condition every day, but I have built a meaningful quality of life for myself, and I want to help others do the same.

 

Writing this book felt like a calling – something I had to do. 

 

However, when I tried to find a literary agent to represent me and help me find a publisher, the rejections came quickly. They were kind and encouraging, but none were willing to take me and my book on. I had been warned this might happen: I’m not a celebrity, and I don’t have a large social-media following.

 

I understand the commercial realities of publishing. But what saddens (or disappoints) me is that thoughtful, lived-experience voices are often sidelined simply because they aren’t visible or marketable enough. People who don’t seek the limelight still matter. And they still have a great deal to offer others facing similar challenges.

 

With that in mind, I decided to go ahead and publish this book myself, and if it only helps a handful of people then I will still consider it a success. My second novel, Take A Moment, which follows the life of a young woman after she receives a shock diagnosis of Multiple Sclerosis (MS), touched many of my readers with long-term illness to the point that they wrote to me to tell me about the positive impact it had on them. I’d hoped to raise awareness of chronic illness with that book and it did more than I expected, so here I am – looking to make an even greater impact to the lives of others.

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What’s it about? 

Here’s the blurb from the back of the book…

 

‘In 2013, my body began to malfunction in a confusing and terrifying way. By summer 2014, I could barely walk, I had continuous pronounced bodily tremors, my speech, hearing and sight were affected, I was severely breathless and fatigued, and I was experiencing several episodes of uncontrollable shaking and muscle spasms (seizure-like attacks) every day. And that was only part of the picture.’

 

When we’re unwell for a long time, our illnesses can take over our lives. Endlessly justifying ourselves, talking and thinking about how we are and what we can and can’t do or cope with – it can chip away at us to the point that we lose sight of what matters in life: LIVING.

 

This is a potted version of my real-life story followed by short easy-to-read chapters on various topics I consider to be important to quality of life – all of which are based on my own personal experiences. These include coming to terms with being unwell, keeping a sense of independence and control, staying positive (as much as possible) and how I’ve learned to navigate life in a different way.

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Each chapter poses questions for you to consider within your own circumstances at a time that’s right for you, with no outside noise to throw you off course. I won’t tell you what you should and shouldn’t be doing, nor how to live your best life or be your best self. In a nutshell, this a book about long-term illness by a person with long-term illness, and its main purpose is to help you help yourself. 

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Buying options

​LIVING with Long-Term Illness will be out in ebook and print on 26th March. The ebook is already available for preorder on Amazon.