Guest Post: Reading Well for Long-Term Conditions by Alexia Casale

How can books help?

How can books help people to ‘live well’ with a long-term condition?

Some books are purely informative, cluing people and their loved ones into the details of the conditions and what current best practice is for treating and managing it. But there are also books for carers, books for kids needing to adjust to a parents’ illness or disability, books about managing things like sleep (as this is often impacted by a long-term condition), books on nutrition and exercise to help manage specific conditions or improve your general health, books on managing mental health generally and specifically, books on recovery, self-help books…so many different books. 

Then there are memoirs about people living with different conditions, whether this is the focus of the book or just an element. And of course there is fiction too.

Memoirs and fiction seem to sit oddly with the long list of information-focused non-fiction above, but they have a vital role to play. Memoir and fiction take us into other people’s lives, letting us walk – or, in this case, share their inability to walk – in their shoes. Of course, no one’s life or long-term condition will feel exactly the same on the inside, but for people trying to find the best way to live with their condition it can be reassuring to not just know but feel that other people have the same sorts of struggles and joys, successes and failures. It’s good to know you’re not alone. Others have been there too.

Living vicariously through a book is a great way to ‘test out’ different options for dealing with a long-term condition without the exhausting process of trying endless things, each in turn and often for weeks on end. Of course, ‘trying’ something vicariously is not the same as getting it to work in real life, but if you can see from reading that one technique is not for you, it helps sort through the options so you can start with the ones more likely to work. Otherwise it can be a bit overwhelming and you can have a lot of demoralising failures before finding something even halfway useful.

Fiction and memoirs also help to build up a language to describe your difficulties, both to medical professionals and to family, friends and other people. Having a long-term condition doesn’t come pre-packaged with effective ways of communicating how you feel or even what you need. Books can be brilliant in providing that… And in some cases, it can be a lot easier to give a loved one a book to read. Precising a story can also be very effective when confronted with a difficult situation, especially in public, where the other person just doesn’t get it.

The ‘distance’ that someone else’s story brings can be good, both when you’re feeling vulnerable talking about yourself and when people are resistant or defensive about listening when it’s personal. When someone’s face to face with a person struggling with a long-term condition, their own emotional baggage can get in the way of understanding: introducing some distance by making it about a person who’s not there, in the situation, can be a great way to deal with a difficult conversation.

And of course fiction and memoir can also be a way for friends, family and people in general to get some sense of what it is like to live with a long-term condition: what the ‘hidden’ difficulties that make life awful are, what is perfectly normal-thank-you-very-much for a person with a long-term condition, and all the little things that are both similar and different when living with a disability or on-going illness.

Books give us both information and empathy, tools to work with and comfort to keep up our emotional resilience… but they also give us an escape. Sometimes the best ‘medicine’ is a way to live a different life, just for a bit, when you need a break from your own. So maybe some of the books a person with a long-term condition needs most have nothing whatsoever to do with that condition or any other.

That’s the thing about books: often we need lots of different sorts to help with different things. But whatever you need or want, a book may be able to provide at least some solution, whether it’s comforting you in the moment or helping you manage your condition so you can spend more time with friends, who can give a different sort of support.

So how do you find the books you need? Librarians.

Librarians are brilliant and they will be able to listen and select not just one book but lead you to a whole host for all the different help, support and fun you’re after. One of the tools they use for long-term conditions and mental health issues is the Reading Well scheme.

Reading Well for Long-Term Conditions

On 3 July 2017, the Reading Agency will launch a new ‘Reading Well’ list of books carefully selected to help and support people with long-term health conditions. The books cover everything from specific health issues like arthritis to coping with common symptoms like troubled sleep or pain, and from ways to protect your mental health when your physical health is problematic to guidance for carers. There are also novels and memoirs to help people understand what it’s like to live with a long-term condition and to support those with one in finding a way to ‘live well’.
There are already three other lists: Reading Well for adult common mental health problems; Reading well for dementia; and Reading Well for young people, which focuses on young people’s mental health.

The lists are developed by the Reading Agency and a wide range of partners including the Society of Chief Librarians, the Association of Senior Children's and Education Librarians, the British Association for Counselling and Psychotherapy, The British Psychological Society, Carers UK, the Mental Health Foundation, Mind, National Association of Primary Care, NHS England, Public Health England, and the Royal Colleges of General Practitioners, Nursing and Psychiatrists… among others!

My second book, House of Windows, was a title on the Reading Well for young people list, and I joined the selection committee for the Reading Well for long-term conditions list, so I’ve now had a pretty thorough overview of how it all works… and it’s really impressive. Not only is there a selection committee and a workshop group of people with lived experience of the relevant mental health or physical condition, but even after they work through the multiple-stage process to create a provisional list, it has to go off to experts in the relevant fields to make sure that all the information is accurate, current and there is nothing problematic.

Obviously not every book will speak to every person with the relevant condition… and of course different people find different language problematic, but pain-staking care is taken to ensure that the list is as positive and diverse as possible… at least as far as can be agreed among a very large and very diverse group of people, coming at it from all different angles!

If there’s something you need or want help with – whether it’s your own mental health or long-term condition, or you want to learn more about something affecting a loved one, or you just want to know more in general – do see what books have to offer.

The best place to start is always the library and the best people to help are librarians, because they know how to pinpoint the very best sources for you. If you can’t get to your local library or it doesn’t have trained librarians, do have a look at Reading Well lists as you’ll know you can put your trust in the fact that books have been thoroughly vetted from numerous perspectives.
And remember… one book won’t hold all the answers or everything you need. But with lots of books, you can build up the tools to solve almost any problem… and hopefully have a lot of fun in the process.

BIO: Alexia is an author, writing consultant and editor. She also teaches English Literature and Creative Writing. Her debut novel, The Bone Dragon, was shortlisted for the Waterstone’s Children’s Book Prize and the Jugendliteraturpreis, and long-listed for the Branford Boase Award. It was also a Book of the Year for the Financial Times and Independent. Her second book, House of Windows is a ‘Reading Well for Young People: Shelf-help‘ title. She is also Director of the YA Shot book festival, which raises money to run author events for disadvantaged young people across the UK (       Twitter @AlexiaCasale

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