On making the most…of a ghost. Heartfelt thoughts on ghosting in publishing & ideas for helping each other

There is something I have wanted to write about for a while now: here it is. I am going to discuss ghosting, what it is in the context of trying to get your work published – and also in the context of staying published. Nothing here is about blame, but about what we could do to help one another.

Every week, there are a lot of messages in my inbox. I do not know if this is the same for other writers after a book or two, but that’s how it is for me. My fifth, sixth and seventh books are all out in the next ten months and, while some would say I am prolific (I have not been doing this very long), I retain a very modest profile bearing in mind how much I have published. I try to use it, however modest it is, or remains. I have recently started a new literary award for carers: I am playing to my strengths and taking frustration forward as an energy because, fundamentally, bringing someone else on and allowing them to feel seen is as important – more important, I think – than the books I will write. Or, in fact, the times I sat there nursing a prodigious Celtic grudge! So let’s try to help you feel better, huh?

The industry is a tough old nut, but you see I love the writing and I have made so many pals and that’s why I am still here. Also, I decided, after one book, that in writing, as in the rest of my life, my modus operandi would be to look after other people if they needed me. Partly because, with a complex background, I know the long-term effects of not being looked after and partly because it is clear that writing a book is a dream for many people; for some – those who are disenfranchised and face barriers for whatever reason and sometimes for a multiplicity of reasons – it may be the place where they feel their voice will be heard.

The book is important, vital: a dream; a voice.

So what do the most upset of the messages say to me? That they don’t know what to do. Yes, rejection is difficult but as I have said repeatedly, it is absolutely part of the writing process. Rejection comes with the territory. Failure (argue with the term, but bear with the way I use it here for me) is central to creative endeavour. Most things you do will fail. I say this quite cheerily and accept it as part of my own adventure too.

There is something worse. Ghosting.

When you never hear back from a query as you start out. NOT from those who say quite clearly that if you have not heard back from us in three months, six months, or whatever, that is a no, but from those who don’t say that. From those who promise they will read things, or give no indication that they will not. This is about agents, but also about those publishers – independents of whatever size – who accept manuscripts without an agent. This is about when a reply is anticipated. So, first of all, I truly think it would be helpful if it were industry standard that everyone gave a fairly accurate figure of reply time…and after that it is a no…on their submissions/query details. There may be good reasons why this cannot happen and I could be wrong, but based on conversations and messages I have had and data shared with me, it seems that between 50 and 90% of queries will not elicit a reply, frequently after chasing.

That’s tough and, because this is not about blame but about looking after everyone, it suggests to me that rethinking might happen somewhere about what is possible and plausible and, frankly, whether everyone is okay. Because you see my dms are not only full of writers but of others in the industry who need an ear, too; the ear of this ridiculous self-styled Mother Bear. Of course I am talking about mental health and how people are feeling and coping.

My personal ghost rate with first and second books is about 50%.

The ghosting still has notches to go up, though. Here’s the next notch. A particularly difficult situation is when you have no reply after a request for a full. This will always be ghastly, it has happened to me twice, and it is awful when it happens to a new writer who is understandably really excited to receive a request for a full. We need to remember that a new writer may be the person I mentioned above – trying to push through barriers and challenges; trying to be heard – and may have been querying their manuscript for years. Again, my thought would be that there is a statement somewhere about response time for fulls. Could this work? Something which says that if you have not heard back from me/us three months after we received your full manuscript, please assume this is a no. As I said, this is not about blame, but about seeing what we might implement. If people are really too busy to read what is sent to them and it is just not possible, can something be implemented there? Something to do with submissions periods and volume. I just don’t know, so please understand that I am throwing this out and posing questions. I am a writer. A writer who talks to writers.

But we are not done. After two rounds involving ghosts, it may be that your book goes out on agency submission and does not get read. This also happens and it is hard on everyone, because people will have worked on this manuscript together and to the best of their ability. I always emphasise that we must look after each other and this final round can be brutal. Do I have experience of this? Of course. So do lots of people. My question is, what can we do about it? I would also like to mention the document linked below – readily obtainable from The Society of Authors – which is about professional conduct. Why? Because I also know of people who have been ghosted by their own publishers; that is, where a first book has been published, the contracted second book has been offered but not read or a period of some years elapses before it is read and this can do terrible things to someone’s self-esteem or motivation. In some cases, I would argue that it is an abuse of power – and that power balance is one element of the industry commitment document here. What do you think? I am sure this is a rare thing, but I have mopped up tears and I will do it again in a heartbeat.

https://www.societyofauthors.org/SOA/MediaLibrary/SOAWebsite/SOA/Industry-Commitment_FINAL.pdf

So, I am a writer and while I am throwing these issues out there, I want to suggest some things that we do to look after ourselves and one another.

  1. I feel a bit sad saying this, but sending work into a void is eviscerating. It is not, from what I am able to see, something which happens most of the time but it goes on a lot. So my first point is that writers, at all stages, need to be prepared, at the present time at least, to be ghosted as well as rejected. Truly, it is best if it doesn’t come as a total shock. That’s partly the point of this blog post. There is a problem. As we strive to fix it, best also to be forewarned. Hopefully it won’t happen though! It’s just, if it does, I want you to know you are not alone.
  2. Following on from that last sentence, do not suffer in silence. Talk about it. Cultivate a little tribe, in person or online (or both) if you can; a group of folk who are involved in some way in the industry. Isolation breeds bad feeling and depression when you are nursing a problem. I go back to what I said about dreams and having a voice. If you need guidance or ideas about forming that little tribe, please do message me. I know it can be tricky and that you might feel shy or intimidated. I really do.
  3. If you are ghosted and feeling ghastly, scream and shout, but be working on something else and keep – I know it is hard – sending things out if you feel strong enough. Most of all, though, keep writing. This might be a good time to try some different writing – different genre or form; different markets or routes to explore, too. Importantly, don’t let bad experience put you off the actual writing. You love the writing. It is a joy. Okay, a tangled, messy joy, but nonetheless, isn’t it a beauty? Reading, too. Keep reading: solace, excitement, new worlds, ideas, ways of seeing.
  4. Stay off social media if you need to. Remember that you are only seeing some of the book news, but that’s not much help when you are bruised. It’s helpful, nonetheless, to put a limit on what you look at. Remember that the ghosting is also not personal. Actually, even if it were, you cannot legislate for everyone’s reactions to you because human beings are strange and complex things! Best to understand that there are some people in any industry who behave badly. I’ve met some absolute bangers in staffrooms, too! It’s better to be you, my darling. Generally, though, move past any thoughts of it being you and see the issue as systemic; that can take a little sting out of it.
  5. Finally, yes I have been hurt by ghosting too. It is good to find the positive and take it forward. What’s the positive? That you use your experience of something upsetting as knowledge with which to forewarn or arm someone else and can keep an eye out for those who are struggling. That’s partly what this blog post is about. Love and strength and let’s ALL make this better, Anna x

Updates, new books, teaching and getting The Alchemy into the world

Anna Vaught4 min ago

Hello everyone!

So first, here is the recently revealed cover of my next book, my fifth and second book of stories: Ravished. If you were to have a look  https://www.foyles.co.uk/witem/fiction-poetry/ravished-a-series-of-reflections-on-age,anna-vaught-9781914114106?term=ravished+anna  you’ll see the pre-orders are up. These are creepy, gothic, weird, mordant and hopefully funny too.  

This book is out on 29th September.

Then, this week, I handed in a tidy second draft of my memoir to the same publisher (they are rather lovely, by the way and I recommend you read their books and consider querying if that’s your bag). My memoir is called These Envoys of Beauty and it’s out in spring, 2023

This is a slightly unusual book in that it’s memoir expressed across twelve essays connected by theme and context. It is essentially a frank account of extended and complex trauma and the many years of ill health that have followed because of that. However, it is also about joy and imagination because I show you how I managed through a deep and abiding (and nerdy!) attachment to and involvement in the natural world. It’s not about a cure. I think that we are too quick to want to see a triumph or a cure for those who are disabled or chronically unwell, but that is a lazy old trope. No; I am not cured – but I have and have had the best company. You’ll see!

In other book news, I have a novel on agency submission at the moment. It’s magical realism and is called The Zebra and Lord Jones. I am hoping we can pull all this together soon, but things are slow out there. I think we have all been overwhelmed by circumstance – by life. It’s important to recognise. News here as soon as I have it, though.

What are you doing on the 22nd of May? Although I am still confirming a few things, in lovely West Wiltshire I will be teaching a full day writing retreat and it’d be great if you came. I am also going to be doing an online retreat in mid June (TBC) for access and to accommodate writers from around the world. These are about writing fiction – novels, novellas and short story collections. Watch this space.

Thank you again for your support of and interest in The Alchemy I have nearly finished the full text and it is my profound hope that we get it out into the world! I would be enormously grateful if you could pledge towards it. A crowdfunded book – new departure for me – all the details are here and we will add new pledges during the six month funding period.

Have a look and, if you pledge, do please share on socials. You are now very much part of the book!

There is still time to apply for the course I am tutoring on over the next year

https://jerichowriters.com/ultimate-novel-writing-course/ – writing your novel in a year. Have a look.

Wishing you well in all you do,

Anna xxx     

Some kids, some structures, some folded lies

On ‘Some Kids’, some structures, and some folded lies

‘What follows are my thoughts on Kate Clanchy’s memoir of teaching, Some Kids and What They Taught Me, published by Picador in 2020 and republished by Swift in January 2022 and the furor which has surrounded it. To me, the matter is so much bigger than one book: it is about structural inequality, a frankly indolent spread of misinformation in broadsheet publications (and others), knee-jerk reactions from all and sundry, including misplaced and fanciful outrage at alleged book burners, and the failure of many people to reflect on privilege and agency, laws protecting minors and the critical social dynamics of who holds the balance of power. I need to establish that my background has been, for years, with young people, partly as a secondary English teacher, and that two of my own children are SEND; one, autistic. Some Kids was very triggering in that respect.

It is not, ultimately, those ‘kids’ or even their parents who hold that balance of power: it is the teacher and memoirist. Readers have worried – as we have seen on twitter, for example, about their own children because, for example, they are autistic; those parents have seen teachers find the text exemplary, despite its dismissive and pejorative language towards this pupil group. What will be thought of their child? Let us return to this: the author, on a learning journey, ought not to be mining the lives of minors, in a book, without all due diligence, correspondence and protocol, allied with compassion for one’s charges. Because of my own context, I know that schools are required to ensure a duty of care for all children in their setting. This duty of care starts before their lives are potentially turned into anecdote by a visiting adult, regardless of whether the depiction is allegedly a ‘composite’ or retrospective permissions might have been obtained from a selected number of students. Therefore, media coverage of some student poets coming forward to support KC as their teacher and accompanying self-justification via the author and Swift Press, the new publisher, do not support best practice for duty of care. Furthermore, the comments by the author about how you cannot ‘cancel poetry’ in January 2022 fly entirely in the face of what is being said by those who have been upset and worried by the book. They seek to cancel nothing. They ask for reflection and a sensitive, thoughtful reparation. What is more, I have not yet seen any evidence that any educational establishment/s knew about the book in advance, and, without their knowledge and critical participation, it is hard to see how adequate safeguarding protocols could have been ensured in that setting. It is possible I am wrong, but it would have been good to see this, I think.

Until the summer of 2021 I had only been aware of the writer and teacher KC through her students’ poems on Twitter. As I write now, I feel I ought to have been more aware. Writers and teachers had been saying much, and I had missed it. Disability campaigners had commented. Now, I went back to 2020 threads when, just to give one example, concerns were raised about racism in the text. I could not believe what I was reading in a book that had been widely praised as exemplary in the concern it showed for young people. Beautiful in its multiculturalism, a book to be seen in every staffroom. Really? Here is one quotation from the Picador text:  ‘I was having difficulty, as Prince Philip had with Chinese people, in telling them apart.’ Or how about two autistic children: ‘More than an hour a week would irritate me.’ ‘If I set them a task, they will stick at it, not deviating, for hours, and never ask why. This is fun.’ These two quotations were removed for the Swift edition, but an absolute wealth of comments on appearance, skin colour, plump, fat, and furry, remain in the updated text, worst of all a comment on a teenage boy’s erection which, try as I might, I cannot contextualise to make appropriate. Truly, I have tried. Lower ability children are referred to as ‘dead weight’ more than once. Some students are apparently ‘just drearily mediocre.’ These terms are used, in context, you could argue with sympathy and a wish to do better, and yet I still their inclusion questionable. And that Blake might have been autistic because he was a ‘perverse and difficult polymath’… ‘with his love of abstruse and autodidact learning…’ is troubling and, I would, argue, ignorant. It is not surprising that there was an open letter to Picador from over 350 teachers and others expressing detailed concerns. This has been glossed over, while the author continues on the cancellation tour and complains about the focus group and the ‘Readers’ in a tone of deep irritation. I do not understand this. I have tried. Why so hard to engage and why mock?

            After discussion, after a worryingly long silence and apparent failure to engage by the publisher, it was announced in early 2022 that Picador would republish the text in the autumn of 2022 with passages and descriptions expressed ‘more lovingly’ and the onslaught continued. Some students came forward to say that had been pleased with their teaching and felt supported, but respectfully that is not all students – because if you are a class teacher you will teach huge number of people over the decades – and what is more, writing to say that you are happy as an adult is consent after the fact and is not commensurate with safeguarding, awareness of the Equality Act 2010 or Rights of the Child. This is important to remember for future children, for future books. These are their lives, as children, and they are extraordinarily precious. This is something that the press, then as now, absolutely failed to reflect on. This is entirely because of an establishment protecting its own. As a SEND mum, I often felt sick following the story. Yes, the children are explained by KC as composite, but that does not make any of this acceptable and never did. It is wonderful that twenty five students – you would think it was every student ever taught from some of the very recent newspaper pieces – came forward to express support and appreciation, but respectfully two things: it is, I must argue, unlawful to portray children in your care in such ways because it contravenes the The Equality Act 2010(I would also draw attention to safeguarding policy and The Rights of the Child), specifically ‘its ‘protected characteristics’ section; moreover, if you have been a teacher for twenty two years you may, teaching across the school years, have taught thousands of students. Who and where are they? What did they think? Did just one of them look at the book and recognise themselves and I could write this piece solely on the peculiarity of ‘we’ in the narrative – an inclusive pronoun that has done an invidious job of exclusion, in my view; a feint which allows the reader to imagine more generally what teachers think and do. ‘We teachers are tough’ wrote the author in a broadsheet newspaper, January 2022. Again, the invidious pronoun. I have met teachers who made the voice in Clanchy’s book familiar; I mean those I have worked with and those I have encountered because they taught my own boys. Flaw, bias, and bad behaviour exist, to a certain extent, in all classes and staff rooms: I will not have been without it myself – and that is why we must go back and look; to reflect. Thank goodness for those teachers who pointed out the wrongness of KC’s peculiar taxonomies of childhood in the book.

I am furious at a teacher’s reckonings passed off as knowledge because this percolates into misunderstandings and gets passed on as fact and scholarship. She has authority, but a lie, or a half-truth – a folded lie – has been formed. It is hard to understand the publishing, legal parsing, editing, prize-winning when these are minors described in this way. I am embarrassed for and furious at the people who came forward – doubtless without all having read the book – to moan about canceling. witch-hunts and censorship. Clearly, the discussions around the book have again exposed the stiff old arguments of not being able to say ANYTHING nowadays, which is, as ever, radically ill-informed, predicated on privilege – your freedom, that is – and plain cruel and self-indulgent

Going forward? I think there must be clear and difficult discussion about things. I certainly feel differently about publishing now, about some journalists, and about a lot of teachers – those I still see defending the book and saying, with unintentional rich irony, that children will be denied a voice. I also do not accept the notion that someone meant to do well and be kind and therefore their behaviour and tropes – how can she be cancelled for not being born woke? asked (shamefully) a journalist in one of the biggest newspapers – should be exonerated. A writer – or teacher – needs to work harder than that and understand both that it is the outcome which is of significance and, also, that within an apparent kindness may be arrogance, ethnocentricity or, an area of particular concern for me, ableism. Within serving and trying to raise people up, there may be pity and, for example, the press of an unacknowledged and invidious bias. We need, also, to have truly clear guidelines – in consultation with those who are specialists in educational law and the rights of the child – so that damage of this kind is not done again. And I worry. The book was immediately republished. Yes, the most often quoted words and phrases have been removed in new editorial, but the book does not seem demonstrably different and I have read them both; moreover,  it feels like little of the hurt caused has been acknowledged. Why else would the new afterword refer to changes made ‘after a twitter storm’? The author says that ‘despite a prolonged and distressing campaign urging them to do so, no young person portrayed in the book has come forward to say they were hurt by it.’ Consent after the fact is not commensurate with what is appropriate as a teacher and within both best practice and law. Twenty-five students may have come forward – and they have my utmost respect – to say they experienced no ‘safeguarding or consent issues’, but this still does not obviate need for concern because it is not for the then child or the now adult to decide, but is, instead, only incumbent on the teacher in charge. the school and their safeguarding officer or team. Beyond that, I am afraid I know that damage is insidious.

I repeat: my context is education and SEND mum here. Centre the students, not yourself.

In conclusion: what has happened is about so much more than the book. It is about structural inequality, privilege, misinformation and both lazy journalism and lazy reading. It is about racism, ableism and classism – about body shaming, and being happy to place others in harm’s way – others who would rather not have to challenge at all but get on with their lives and their work. They raise their heads above the parapet because of moral compass and social conscience, not as something predicated on a ferocious ego; in this case because they were concerned about children and young people – the point we must keep returning. These were minors, in schools. With freedom comes responsibility: that you need to be accountable and open to challenge. Your views may be outmoded, or never acceptable in the first place because they were based on presumption and their result was cruelty. In publishing, education and in British society, I know we can do so much better. It might be painful to have to reflect on your attitude, but it is much less painful than being unheard, marginalised and in danger. And as for myself? It is taking me a long time to get over this book: I believe it is the worst book I have ever read twice.

Why The Alchemy?

So, you may have seen this:

It’s currently crowdfunding with Unbound and I really want it to exist. The team there has really grasped my vision and reasons for wanting to get this book into the world and, thinking of the messages I have received, I can see that quite a lot of other people do too and that is the best. This, from the publishing director of Unbound, John Mitchinson, was marvellous (and I do draw on a lot I have learned in my teaching background as well as in writing and other areas):

‘We’re thrilled to be working with Anna Vaught. She exemplifies the patience and generosity of the best teachers.

Having suffered and triumphed herself, she is able to offer calm and clear advice about how to translate ideas into publishable work. The Alchemy offers a warm and reassuring arm round the shoulder—it will inspire and motivate writers at all stages in their career but especially for those who are struggling with confidence.’

It is a book about writing YOUR book; a work of fiction, but in fact there’s plenty in there which you could apply to a non-fiction book or, for that matter, any extended creative project. It’s about gentle productivity; that is, small steps towards a big thing. Not only that, getting you to re-evaluate what you already have in terms of experience, thought, time and resources. What you consider work, even. The book contains a lot of things which I thought were probably true, but the past few years have confirmed that for me. In six years I have written a lot. In that time, I’ve been working, looking after three offspring, two are SEND who were radically let down by their schools and one by multiple agencies to the point where he became seriously ill and I was his carer and this went on through the pandemic: we had never had any support but this period pretty much felled me. My physical health had deteriorated, I had already been managing mental health problems – anxiety, OCD, depressive periods, dissociative episodes – for decades (and reasonably connected with complex extended trauma), now I was dealing with Long Covid and a seriously ill son. I had also had some very unpleasant experiences in publishing from which I’ve had to recover and have taken all the steps I can to try and ensure they do not happen to anyone else.

So gentle productivity in a book for all writers, but I have a particular eye on those who are carers, chronically ill and who are disabled. On writers who are tired, jaded, had their confidence knocked by others or who come from a background the impact of which they have not fully released – by which I mean, if they were demeaned, made to feel stupid or repeatedly mocked. Those are all different things of course, though intersectional, and I want to say I know I am hugely privileged compared with many.

But I wrote. I worked. I worked on cards sitting in a supermarket car park; I thought and plotted and planned and asked small questions when I had to be up at night being watchful. I wrote in short bursts and learned that pondering and ruminating are just as much the work as my sitting there tapping away. I day dreamed, asked small questions about people, situations, things I had seen out and about or read about or experienced. And I kept doing it. When the work began to build up, I developed little techniques for managing and editing it. I cried as I waited in hospital car parks, but then I tried to have clear thoughts about people and situations I wanted to write about, or was already writing about and needed to refine or develop. Small questions; small steps: taking what pockets of time and energy there were and using what I had. When I was admitted to hospital myself all I could think was that I was watching, watching. I had a TIA and was admitted to the acute stroke ward: I had to rest but I was looking, and listening and thinking about colours, textures, feelings, noises in the frightening ward, all the while, and it was distracting and consoling. I was telling myself and making stories.

The point is to be observant. And not to whip yourself mercilessly towards getting projects done. I did not have time or energy and I used what I had and learned to see and value what was there.

I hope that one day you read the The Alchemy and we all get to talk about it and that it helps you.

Here, if you feel you would like to pledge towards it – as I said, it is a crowdfunded book – I would love that!

https://unbound.com/books/the-alchemy/?utm_campaign=the-alchemy&utm_medium=AuthorSocial&utm_source=AuthorActivi

Introducing The Alchemy

So, two days ago, Unbound and I launched my first guide to writing and I would love your company and your help on this new adventure.

It’s all about gentle productivity in your writing. Publishing director of Unbound, John Mitchinson had this to say to The Bookseller here – https://www.thebookseller.com/rights/unbound-crowdfunds-vaughts-author-guide-to-gentle-productivity – ‘

We’re thrilled to be working with Anna Vaught. She exemplifies the patience and generosity of the best teachers. Having suffered and triumphed herself, she is able to offer calm and clear advice about how to translate ideas into publishable work. The Alchemy offers a warm and reassuring arm round the shoulder—it will inspire and motivate writers at all stages in their career but especially for those who are struggling with confidence.

And I said,

The Alchemy is about writing a book—a work of fiction of whatever kind—when you thought you could not. This is a book for everyone, but with a particular eye on those who are tired and lacking in confidence, who are disabled, chronically ill or perhaps carers for a loved one who would struggle without them. Essentially, this has been me for some time now and that is how I know about productivity and challenging what it is. Not from deadlines, spreadsheets and flow charts (although those things are excellent), but from learning to work with what I had, when I could and, also, in learning that writing your book happens all the time.

Now, in a new departure for me, this is a crowdfunded book, so I’d really love you to pledge in order to help us get it into the world. New pledges will be added in the coming months – and extra treats, too. All the information is on the page that follows and you can also see an excerpt from the book. It’s so important to me and I really want others to have it. A distillation of twenty years of teaching and mentoring and of an intense six years of writing! Here: https://unbound.com/books/the-alchemy/?utm_campaign=the-alchemy&utm_medium=AuthorSocial&utm_source=AuthorActivity

Practical suggestions

A writing pal as you start your book, or when you’re stuck

Exercises

Personal essays

Resources

Reading

Encouragement

A wealth of ideas

I hope you will love it and when you write, if you are sad, unwell, struggling, chronically ill, a carer – these are world I know well – you will never be alone. Because the big idiot in the picture below will be with you.

Mother’s Day Every Day


A few years ago I wrote my dead mother a letter. It was poetical, but promised murder; ironically, she was already dead and hated poetry for its teasing impulse of hope. That hope had died within in in her prime.

I have had what we might call a colourful time. I have battled, but not always beaten, a number of mental health problems and, for as long as I can remember, I have been prone to unrelenting dark moods; anxiety has, not infrequently, kept me secluded and apart. I have been a chronic self-harmer, tried to control the vagaries of a messy world with routine and ritual, twice tried to take my own life. On the first occasion, my mother found me, but refused to take me to hospital. That was a seminal moment. I was fourteen. I thought, ’Maybe she doesn’t understand.’ But later I thought, ’Maybe she just wanted me to die?’ It was hard to feel safe or loved after that, but then I am not sure that I knew what these things meant—so I describe that feeling only with the benefit of hindsight and because, as a mother myself, I feel so sad for my child-self. Actually, no: not as a mother. I would feel that anyway, as a human being who does not want another to hurt.

In the end, I started to get the help I needed. I was already helped profoundly by my reading and the way in which I was immersed in the natural world, and in those comforting rituals of home I felt I could establish. I had CAT (Cognitive Analytic Therapy) on the NHS. It changed how I saw myself, my life and my past in profound terms. And it had homework. I am a swot, so I liked that. Ah, not easy homework. Letters to the therapist and, more pertinently to this piece, letters to my dead mother and assorted other folk whose influence weighed heavily and unpleasantly on me as I swam in a sort of viscous, black water. Those who could have helped but did not. But I began to get out. CAT helped me to begin to see the world in a brighter, fresher way; to begin to live unladen by enervating memory: to get away from careering but very dead relatives. Writing to my mother was a part of that. I could have written a book on her. Actually, I just did, and really she is in everything I write, but back to the moment. I had some things to say and also I had to make a stand and confine her to my past. I would say I am ninety percent there. But still, black moods, flashbacks and dissociation: where am I and who am I and where, please tell me, are my edges?

My mother has been dead for thirty years. I might say she’s caused more trouble post mortem than when she was alive and kicking. I can hear her now, as I write this. It’s a sort of hoarse chuckling. She wouldn’t have to use actual words, for just a look would do. For someone with multiple health problems, she kicked a lot. And to me, tiny was Goliath. (Although we know what happened to him.) To the outside world she was brilliant. She was brilliant, actually. A tiny pretty Welsh woman, full of resources and craft; a tub thumper, campaigner. A respected pillar of the community to whom I may owe my campaigning tendencies. She was too clever for the life in which she found herself and thus was chronically frustrated. Responsibilities and poor health meant she couldn’t get out. I think she swam as best she could through a vast sea of might have beens—such as how her life might have been, on fire with passion and tremendous achievement, had she not been compromised by a weak heart and the attendant illness that visited. And I was another might have been; had I not existed—had she not kept me, the baby who further compromised her physical and emotional reserves, and whom her friends told her to abort – things might have been different. She could have been steadier and able to spread her wings. So when she told me how I had weakened her, I believed her. It is hard not to, still. When she died, I thought I was complicit and was unwell for a long time afterwards.

Yet, my mother made constant references to how she was strong and I was weak. It should have been the other way round; ironically, it was not because, apparently, I was the child of no good quality or just desire. I think the deathly low moods to which I became accustomed and against which I periodically lost the will to fight visited me at an early age because I became convinced, mixed up with earliest memoires, that I was a scabrous wound, pick, pick picked away. A shouldn’t have been which brought on the ghastly might have beens. I tried to tell her how I felt when I was a little older when she declaimed, as she often did, that I was trial and burden to all around me. Then, she pulled my hair and my ear and said, like a whirlwind of curses, ’You feel? Everything is all about you. You little bitch! You will dance on my grave after you’ve put me in it.’ We were folding sheets to put in the airing cupboard when she said that. It’s like it was yesterday, the screeches over the laundry-day diligence. A life replete with incongruity. And there was no-one to tell, for she was (now; my mother came from a large rural Welsh working class family) a middle-class pillar of the community; of good name and standing. So it had to be me, didn’t it? Here again was one of the worst things she would say to me. I find it hard to write this even now: here it comes again, at a rollicking pace:

’Little bitch. You will dance on my grave after you have put me in it. And we ALL know what you’re like!’ It must have been true. She couldn’t empathise with me because I was a nasty little eldritch child. Credence of this followed soon, each time. The doorbell rang. It was the vicar: ’Oh Mrs Llewellyn, you were so kind to send flowers to my wife when she so poorly and you were so kind to read the closing prayer at Mrs Mobbs’s funeral.’

And the phone rang: ’Oh Mrs Llewellyn, you have done so much to change the face of this struggling school. You are an inspiration to all teachers and, in fact, to all members of the community.’ And a letter came from the letter box: ’From Greenham Common: Oh Mrs Llewellyn, it was so kind of you to send us so many cakes and all those beautiful knitted socks and gloves because we protesters don’t half get cold and hungry and it’s people like you who keep us going.’

So I carved out my name with self loathing on my skin; hit my head with my fists until the ringing in my ears made me feel a little less alone. It had to be me, me, me because it just had to be. How could it be her? Just look at how marvellous she was! And as a response to stress and anxiety, the self harming stayed for over twenty years. If someone didn’t like me, or someone disapproved of me or said the dreaded words, ’Oh we ALL know what you’re like’, I scratched it on my own skin because those were, for me, prompts for a sort of annihilation. I say, a sort, because there was always more laundry to be done afterwards.

And still I tried to talk to her: ’Mummy, I feel so sad!’ Ah, it was all the words of the pitiful, self-indulgent creature. She told me flatly that depression, adolescence or even moods didn’t exist. These were phrases invented by those who peddled what she called ’Psycho-babble.’ She kept out books for me to see—Dealing with Exceptionally difficult Kids. Is your Child a Monster? Strategies to Cope. Are You a Saint who Birthed a Sinner? They were left out like coffee table books. Her anger was palpable, but denied. She was too pure, too good to be angry. I was the little canker. When her friends came round, she stuffed the books in the cupboard and put out ’Country Living’ while she and her harping porcelain doll-faced friends (as I saw them in childhood) drank tea and compared miraculous births and martyrdoms.

I believe that my mother was unable to have a strenuous conversation with my father, who was bright but not in her league and possibly not aware that he wasn’t. I used to hear them arguing: ’Books, opera, you never take me anywhere, I am so bored, bored, bored, I am practically dead.’. Then my father would go and have a burn. The bonfires he always started when indecision, conflict or any sort of hiatus beckoned. He was a good man, but I don’t feel I knew him at all. He was tall and strong and his shoulders like Atlas, but he was weaker than his wife and he would acquiesce when she left a hairball from her daughter on the carpet. He loved her and didn’t want to upset her and also he had to get ready for Evensong because he was a lay preacher and had responsibilities.

Ah now, I am making you sad my bravehearts. I am sorry.

Mother’s Day. I cry. And every day, at some point, I think, I think, I think of her. Why couldn’t it have been simpler? Unburdened? I know, now I am a mother of three, that it is hard and that we mothers can be fragile and friable as we work out what to do. But do I spit scorn and spite at my children as she did to me? I am not sure that I do. What do I think? About her? I think that I want to be sympathetic and that her unhappiness took her to dark places. I think that I don’t want to inhabit those dark places, in her wake. I think I miss her every day and I will never stop. I learned about determination, persistence and campaigning from her. I don’t know whether she believed we had a soul, but she believed in intellect; in using it, deploying it: allowing it to take flight and to animate us. I think she was brilliant. I imbibed so much from her and, yes, I do feel such sympathy for her because her life could have been so different. I think illness turned to spite and I was an unplanned child she had the heart and gall to keep. As she constantly told me. I wonder if she had vicarious hopes for me; that I would do the things she wouldn’t be able to and yet that was wound up with her own bitterness. Perhaps, as adults, we could have resolved this and got along, healed and communing. I will never know. We could have understood the difficult paradox of our relationship and gone forward. Not to have had a friendship with her as an adult upsets me, still. Because despite everything that had happened, we had potential.

Will I ever forgive her? No. But I have tried my best to understand because I think she suffered and was suffering and because she was not only one thing. She did good too.
Did she love me? I think…maybe, in her own way. Did she want me? I think she hadn’t, but loved me against her will and grew to hate me too. There’s the paradox again. The last time I ever saw her, she had been refusing to speak to me for days. I didn’t know why. She wouldn’t say. That was the punishment. I saw her on a railway platform. I was still waving when she turned away. I never saw her again and I thought that if I saw her dead body I would die too. Yes—I loved her with passion; she loved with spite and flame. It was complicated. Part of me hated her because each day brought with it a fresh knowledge of what a trial and a burden I had been; of the baby that should have been left in the bucket (hence the phrase ’Baby in the Bucket’ that I used in Killing Hapless Ally, my first book, which was autobiographical fiction) and who had better atone for having been allowed to survive. I internalised that and I can feel tears pricking my eyes and that my fingers are clammy with a little anxiety as I write this. The hoarse chuckling is there, just at my back. As I said, post mortem, she’s still giving me some trouble.

Now, I have three boys of my own to mother; I do my best; I fail; I try again; I ’fail better’—as Samuel Beckett’s phrase has it. Sometimes, I even succeed. Through it all, I’d be lying if I said my experiences of parenting don’t regularly evoke the melancholy of being parented myself. But at least now, I have – though it is still not consistent because the damage was so early, prolonged and complex – the wherewithal to challenge that brooding, for which I have the support of MHRS (Mental Health Recovery Service) to thank. The depression, the OCD which I developed as an attempt to fashion a bewildering world and hold it in my hand with ruminating and intrusive thoughts, ritual, order and lines of books repeated over and over until I thought, ’Safe?’; the stalling anxiety; the self loathing and self-harming and the times I tried to destroy my own life: at the heart of all that, a fiery sense that I should not be and everybody knew. I would have to say that it began with her.

Ah, but there’s more to it than that. As I said, I’ve not forgiven her, but I have written a letter to her as part of the Cognitive Analytic Therapy a hugely skilled team laid on for me. I feel so sorry that she despised hope for the lie it gave her and I really do need to keep her at arms’ length, because she’s influential although long-gone.

And yet and yet.

Love is a many-winged creature and in my letter I also wrote this: ’You were my jagged pointing monster, but I loved you Mummy. I loved you. I couldn’t help it. I still love you. And I want you. And I miss you every day and I will never stop. Happy Mother’s Day and I think of you always. I love you, mum. Anna x’

On my brilliant mentee…who mentored me

This is a really special blog post, and the words are not mostly mine, but those of a brilliant person, who is my current writing mentee. Twice a year, I work for free with someone who could not otherwise access a mentoring or writing course and it is one of the best things in my life. I want to encourage writers and would-be writers and also understand more about the barriers that may be faced. Most frequently, those I mentor are writers who are disabled and/or chronically ill (much depends there on how one wants to define oneself). I myself manage some neurological damage, periods of intense fatigue and a pain condition we have not got to the bottom of, but my primary challenge is a mental health one: owing to a background of sustained and complex trauma I have dealt with OCD, generalised anxiety disorder, prolonged insomnia, nightmares and flashbacks, depression and I have dissociative episodes. For the past few years I have also had additional caring responsibilities for my eldest, who has been seriously ill. So it means the world to me to help others release and sustain some productive creative work and, really importantly, to look at what we can do in the publishing and writing communities to make this more possible. So what follows is an interview asking some of those questions, embedded in a superb piece of writing about illness, disability and the world about it.

A final point: I would like to say thank you to Indigo Rose for taking this on. You’d have to mine a lot of emotional and physical resources for this account. Then I want to say this: the last few years have been so hard for me and for my family, but over the past six months. exhausted and not knowing how to manage it, I have had this lovely person watching over me and giving me advice on managing stress, fatigue and pain.

Here she is

Tell me a bit about yourself and what you’re writing. 

I am Indigo Rose, I am 46 years old. I am a chronically ill and disabled* writer. I am new to writing and in the early first draft stage of my projects. 

My personal situation is that I am severely affected by multiple chronic conditions which affect many parts of my body. I am a power chair user and dependent on full time care and welfare benefits. Writing is not something I am able to do consistently, I have to be inventive and patient. Despite that, writing is something I enjoy and find healing and I also believe that my situation has contributed greatly to my feeling that I have something new and interesting to say.

I am currently working on a novel, a memoir and a nonfiction book, the latter of which is based on my experiences with the medical profession. All of these have a similar theme, that of two worlds-the sense of a “real world” and its rules where you aren’t accepted and can’t be considered a success, and the world you can attempt  to create yourself from the margins, where the rules suit you and you can thrive. In all my work I am asking a question, can the two worlds come together or can the dominant world, the one with the power and status change to include those it currently judges poorly or expels?  

I’ll start with a brief rundown of my story with chronic illness, not because it’s uniquely interesting but because it’s horrifyingly common. I can’t talk to you about my ambitions and my barriers without you understanding the reality of chronic illness which includes neglect, disbelief, mockery, gaslighting and medical negligence. I thought my case must be a one off, just bad luck or bad doctors but I’ve heard versions of my story told back to me on social media and in support groups day in day out for the last decade. This is happening all over the world particularly to people already marginalised. Of course many people are fortunate enough to have a more straightforward experience. The more well known your illness is and the more privilege you have the better your experience will likely be. I want to share how things are for the rest of us. Those of us you are less likely to encounter but who see and experience life from the margins. Who have stories to tell if you can help us tell them.

I come from a working class family in an affluent part of south east England. I was a sensitive, different child and I spent my teenage and young adult years believing I had to deny my difficulties in order to be able to function in the world so I learned how I could push them down and myself forward. As a result, I was the first person in my extended family to go to university and I got a career in TV, working and living in London. I had some minor long term health issues but I prided myself on managing them myself and very rarely saw a doctor.

At the age of 26 things dramatically changed when I became very physically unwell. I collapsed at work and was sent to a walk-in clinic in a cab. That was the first time I had seen a doctor and the first of many times I was told I was experiencing stress.  My life was not stressful but they insisted that as a single woman with a career I must be. That theory held with every doctor I saw. I was gas-lit into believing all my  physical symptoms were symptoms of either depression, anxiety or stress. It made no sense but after my tests came back normal I had to believe they were right. I later discovered from my medical records my tests weren’t normal. I discovered multiple abnormal test results were kept from me and instructions from specialists ignored. This meant severe and disabling conditions, (one of which would years later almost kill me), were not treated. It was agreed between doctors that no further tests should be done as it would just somatise me further. I was given anti depressants being told that it was not for depression but for fatigue. I said they didn’t help the fatigue and they just kept increasing the dose. In my medical records  the fact I was on these was used repeatedly as proof that my problems were psychological. To add insult to injury those drugs gave me a severe life threatening syndrome but of course I was told the symptoms of that were psychological too. I didn’t call an ambulance when I had these episodes because I had been told not to seek medical help for any of my symptoms because “we know there’s nothing physically wrong”. If I had, I now know I would have been admitted to intensive care. However, I was successfully gas-lit and believed that somehow there must be something so badly wrong with my mind that it was capable of creating these symptoms.

 Eventually one of my issues was partially treated but because the doctors had down-played it as incidental and unrelated to my symptoms, when I started to feel a bit better I truly believed I had finally fixed my mind.

Because of that I carefully got back to the “real world” albeit part time work rather than full time. I had some setbacks but because I was so convinced it was a psychological issue I stopped doing work that I loved (office based) and decided it would be better for me to get a stress free physical job. Not long after that I crashed catastrophically once again at work. My family told me I look ghostly and skeletal and were preparing for the worst during that period. My state of health was obvious to those with eyes that wanted to see. I lost the ability to walk and truly felt I was dying.  

My GP laughed when I told him and refused to do any tests. I had to ask my family for money that was put aside for if I got married to go private. That private doctor diagnosed me with the condition that almost killed me and for the next eight years I would be diagnosed with the multiple serious conditions that I had all along, plus some that had been triggered by those conditions going untreated for so long. All interventions now are attempts at stabilisation and slowing progression and I am left severely unwell and disabled.

As a result I have had to come to terms with the fact that society doesn’t really like severely disabled people. It has been a shock to suddenly be made to feel you shouldn’t exist, that attempting to meet your basic needs is somehow rude and entitled. The way disabled people are excluded, abused and neglected has shocked me. I have terrible stories just from my own experiences. Stories that are common-place in the disabled community. Stories that are not heard and would not be believed about our reality. Certainly stories that most people would not want to believe are true.

 An example which may be more visible now is the way those of us who are clinically extremely vulnerable to Covid, are not being considered when it comes to the covid strategy. We have not been given any way to manage our risk, particularly those who work or have children in school. There is also no support to help us exist in society safely. This leaves us with the stark choice of risking our lives literally or with the prospect of long covid on top of our existing issues, or to stay locked away. When we query this we are usually faced with the argument that vulnerable people were vulnerable before the pandemic (to flu etc,) and no one worried about wearing masks and ventilation then. This tells us that instead of finding out we have been excluded and discriminated against in the past and wanting to fix that, people would rather say, “but we’ve always discriminated against disabled people and it was fine so I want to continue”.  This attitude unfortunately is not a surprise to me  and not unusual. It’s hard of course because we didn’t need another such significant way to be marginalised when we were already barely coping. Our situation always just seems to get worse, not better. That’s hard. There is a myth that we all get an abundance of support and care. The reality is very different. I have received help, for which I am very grateful but I am also fully aware that the rare times I have received help have been in part due to the privilege I have being a white, educated person who, although was raised working class and now reliant on welfare, can pass as middle class.  The discrimination we face is extreme and yet it has not yet been fully acknowledged by mainstream society. 

There are only a fraction of us who are able to access the writing and publishing worlds. Even those who do I would imagine must struggle immensely. I exist within a society that excludes me in multiple ways. I’ve learned my  very existence triggers the world to shame, punish, gaslight as well as physically and mentally harm me. My only means of escaping that has been to accept and then embrace that isolation. I’m attempting to create my own world, with my own rules and values. A place where my life matters. If I want to feel like a valuable human I have no choice but to become invisible to you, if you can’t see me you won’t hurt me.

What are your ambitions in relation to writing?

I have two key ambitions. One is, as it stands, more fanciful and distant and one is more positive and realistic.

Ultimately what I want is my stories, perspectives and voice to be heard by as many people as possible. I want many disabled and chronically ill people’s voices heard. I believe what we have to say could open people’s eyes, give a new perspective, even change the world.  In common with all marginalised people we are canaries in goldmine- we experience and see first hand the dark recesses of the system we live under, we can warn you about what might be coming. As someone whose lifestyle was once represented in culture and literature- the single career girl living in the big city, it amazes me that my lifestyle now is not represented at all.  Many people  won’t feel comfortable using the word lifestyle when referring to disabled people, but why is that?  Lifestyle is the way you choose to live your life with the hand you’ve been dealt. I am the same person now as the person I was then but with so much more, depth, insight and experience. Being disabled, for me personally, is not just one aspect of who I am, it is the biggest factor in everything I do, every decision I make. It heavily influences who I am in all areas of my life. It is with me all the time. Being disabled is as much a part of me as being human is. Being able to use my imagination to work within that tight restriction and create a valuable life is what I do. This is partly why disabled people have so much to offer the creative industries. We are used to finding innovative and interesting routes though difficult, unusual and complex situations. My brain works entirely differently to how it used to.  My perspective has changed. The “real world” and its values you know crumples around you and you have to build a new one on the fringes.  I have so much more to offer now but no one is interested in my life anymore. I’d like to be a part of changing that.

I’ll talk more about the barriers to me achieving this later but they seem to me to be legion. This is why I am more focused on my more accessible ambition.

Due to the severe impact on my health caused by pushing myself too hard in the past, I have had to change my understanding of what ambition is in the last few years.  Ambition as we understand it in capitalist  society has put me in situations that have dramatically impacted my life for the worse. More than that though, ambition has told me that who I am as a disabled person, is not good enough. I should always be aspiring to be less ill and disabled.  As a disabled person I get that message enough already. So my new ambition is to accept and love who I am and my situation. This is my life. It is not less-than, a failure or a life to be pitied. It is as worthwhile and valuable as anybody else’s. I know I want writing to be part of who I am, not focused on a particular goal, just having fun with it.  I want to work out  what kind of writer I am and how I can make it work within my limitations.

I’m working out my methods so I can make writing fun rather than work that will stress me out and inevitably compromise my health. For me writing needs to be therapeutic, healing and supportive of my health, and to achieve this I experiment with all the different aspects that go into writing from planning, research, learning to things like working with  stream of consciousness writing. I approach it as a game, or a puzzle to be solved. 

This is partly because I enjoy doing that and it gives me a positive focus outside of everything else. It’s very difficult to have fun in my situation. I can’t eat the food I want, dance, walk, go out socially, go to events, drink, play sports, do crafts, I can hardly even sleep. The list of fun things I can’t do seems endless. That’s why writing for me has to be fun. Everyone deserves that.

What barriers do you face due to your illness/disability in relation to those ambitions?

Most of the barriers relate to my first ambition, to get my voice heard but some relate to my ability to write, even as a positive, fun activity which is the goal. Each barrier I talk about I also know is not just personal but also more generally systemic in the disabled and chronically ill communities,

PHYSIOLOGICAL

Quite simply my symptoms and level of functioning restrict how I write as well as how well and how much I can write. This also prevents me from looking forward to the big dream of getting my voice heard, how could I engage with the other aspects involved such as promotion and connecting with others just as two examples. There are very restrictive limits on what I can cope with. Energy levels, pain levels, psychological issues and sensory overload are all examples of barriers to both writing and the extra work that would be involved in getting published. I am new to finding out about the industry but already I can see words and phrases that scare me because they seem impossible for me  e.g. networking and finding community, getting beta readers, joining writers groups. These seem to be fundamental parts of being a writer but when I only have tiny windows of ability to function I may not be able to partake in these activities. I use my imagination to work with my health related restrictions. I play with and adapt the whole process whether that’s dictating flashes of inspiration to my phone, creating a structure on scrivener, streams of consciousness typing, or small amounts of editing. All aspects of writing are tough for me and I enjoy the challenge but even then I worry it won’t be enough.

TRAUMA

As I said before, my story is not a rare story to those of us who have been through something like this. It’s traumatic, not a one off trauma but one that surrounds you for years or a lifetime. This often leads to PTSD or more usually complex PTSD. We are not immune to trauma from other causes either, in fact for a number of reasons, (intersectionality being one huge one), we are probably more likely to have experienced trauma as well as the trauma of illness and lack of bodily integrity and the way we are treated as a result. I cannot avoid most of my triggers as my triggers include doctors, medical treatment, agencies which are there to help me, my community and friends.  

Although some of my trauma is in the past, a lot of it is still happening. I am still in it and I imagine I will be for the rest of my life. That makes it extremely difficult to feel safe to share my stories, ideas and perspectives. It’s hard to heal and put your head above the parapet while you are still in traumatic situations.  It also makes day to day tasks challenging, (even positive ones such as writing) and it makes the idea of publishing almost impossible to imagine. 

I carry a lot of shame, and I’ve seen how society shames disabled people systemically on a daily basis. We are made to feel like we aren’t trying hard enough, or we are burdens, expect special treatment, don’t contribute, are faking or being melodramatic. The ways society has to shame us seem endless. For as long as I could I fought to hide my situation by not using visible aids when I needed to, taking risks to do things I knew were dangerous to meet the expectations of my friends, pushing myself into work that wasn’t sustainable, all to prove I was one of the disabled people who fought to overcome. It didn’t work. When I suddenly became so ill and disabled I didn’t have the option to hide it anymore, attitudes towards me shifted fast. Friends spoke to me as if I was a different person, not the person they had been close to for 20 years. Strangers treated me differently. Everyone spoke to me from an emotional distance, if they spoke to me at all, mainly I was ignored. People just fell out of my life and were replaced by endless assessors, form fillers, people trying to work out who you were and what you deserved. I had not changed as a person, I had not changed my attitude, my sense of humour, my love and interest in people or my desire to support them. It was just the visible disability and the fact I could no longer hide those visible markers- the bed, the wheelchair, the poverty, the need for adjustments (email instead of phone, accessible restaurants on the rare occasions when I was able to meet up). Those were the things that made people say “you are too much”. I feel who I am and what I have to offer is not enough to compensate for having to make those relatively small adaptations. If even my closest friends don’t think I’m worth it, who will? The shame of being such a burden is huge. Maybe, if I’m invisible and don’t make a fuss, hopefully I won’t bother people. 

Although many of us have these issues with trauma, as I’m sure most people are aware, we do not have the best mental health care on the NHS. There are additional barriers to anyone who is intersectionally marginalised.  The barrier I personally struggle with the most is that I have had my physical health issues blamed on mental health for many years with catastrophic consequences. As I have explained this is not by any means unusual, particularly for women. When mental health issues from trauma came to the surface for me, I felt effectively shut out from seeking NHS support because I knew it would affect my physical health care, which is already less than optimal. After all, look what happened when I had no mental health issues. They not only told me all my physical symptoms were due to mental illness but they did nothing to treat or diagnose this supposed mental illness, except put me on drugs that almost killed me. So, as you can see, trauma issues are an ongoing barrier both to enjoying writing but also a barrier to being able to interact with others and therefore to being seen and heard.

SOCIETAL

There are so many societal barriers, that I can’t cover them all here. Society does not have a place for disabled people. This manifests in the benefits system, the care system, the medical system, in the law, in the workplace, in communities and in friends and families. We are not wanted. Whether we are denied access, not supported to fight for our rights, or because our voices are simply excluded or misinterpreted. We don’t have access to the same rights and privileges as non-disabled people do. That can manifest in small ways such as that I cannot create a set up in my home to be able to write comfortably or safely, or that my local writing group is held somewhere not wheelchair accessible or covid safe. I feel I can be excluded because I don’t think the way “normal people” do. I don’t, or can’t, adopt the mindset based on the predominant capitalist ideology. That can be misunderstood as not caring enough, or not trying hard enough and it can mean being rejected before I even start. Disabled people, like all marginalised people, face both micro and macro aggressions on a daily basis. This can make me unwilling to engage with writers and the industry because while it should be open and creative, unfortunately from what I can see, the industry itself seems very rigid and built around capitalist ideologies that don’t work for me.

We will all have different stories about being excluded but I would bet that all our stories will be confronting and certainly challenging. Us speaking our truth is asking people to acknowledge the way society and individuals inadvertently contribute to our marginalisation. Whether that’s not wearing a mask, parking on pavements or drop kerbs to pick the kids up from school, supporting banning straws, not wanting to pay extra to make your business accessible, not making accommodations for friends. On top of that you have to face up to how many of us there are, how we are suffering, how we don’t bring it on ourselves and how it’s possible that one day they could be one of us. Disability is one of the only marginalised groups that you can become a part of any time, perhaps suddenly and certainly against your will. That scares people because they see disability as negative in large part because of disability tropes which I’ll come to later. If we had more diverse disabled voices, then people could see the richness and reality of our lives and then hopefully wouldn’t be so afraid of us.

Of course, people are also scared of our physical and neurological differences. They don’t know how to interact with us. Again, we are such a huge percentage of society, if our faces and bodies were seen and our voices heard, then so many of these factors would cease to be scary for people.

This is why we have very few allies.  Not many people want to take that on, make that many changes to their own lives, or question whether their views support disabled people or exclude them. Often it seems a step too far even for those willing to be allies for other marginalised groups.

 Whatever we do we are judged harshly by society. If we don’t act positively enough, push ourselves hard enough, “positive think” our way out of our limitations, then those limitations must be our own fault. Even if we do all those things, we can’t be doing it well enough because we still have some issues. Then, when we’ve been fully brainwashed to not dwell on our limitations, we face the benefits system where you have to describe in detail all the limitations and symptoms you have been told to deny, minimise and ignore for so long. When you are ill anyway, remembering to not put a positive spin on your situation when being assessed is difficult and traumatic. Not only are you facing up to your reality, you are also admitting you are a failure to society. It’s pretty dark stuff. 

I’ll talk more about the barriers that the benefits system puts in our way shortly as it is  a big part of how society sees us. It is presented that we receive easy to claim benefits and perks when really it is exceptionally difficult to access these sub-par attempts to make up for the barriers we face. The multiple, regular assessments we have to endure for each small aspect of the “perks” we receive are seperate, and can include a huge assessment each for two seperate disability benefits. Then there are assessments for a blue badge, care, district nurses, getting a council house, adaptations to a council house, getting a wheelchair, and more. That doesn’t even include all the doctors, nurses and therapists you have to see. That is actually a  barrier to writing in itself because each assessment has to be planned and is exhausting and stressful. Writing is just not possible when those assessments are on-going.  It’s no wonder, the positive attitude we’ve been bullied into for so long sometimes spills into those assessments and leads us to say we can do more than we can, causing us to underplay our symptoms and difficulties. It’s what society trains us to do!  It’s almost impossible to change overnight. We put a positive spin on things to please people, to be accepted and not shunned. Obviously the benefits system doesn’t miss an excuse to deny you the money you need. Non-disabled people are led to believe that most people over-play their issues to get benefits but I cannot possibly see how that can be true because society and the system are set up to encourage people to underplay their issues.

In the past people have expressed discomfort around my wheelchair, tinted glasses or my catheter. For other people it could be their guide dogs, hearing aids, speech impediments or. The sense that we will be extra work, extra responsibility or a burden. Sometimes people feel resentful of us because of our benefits, or parking spaces or all the support and the mythical, cushy lives they believe we live. That can impact how likely they are to provide us with or help us access adaptations to enable us to access certain things.  

I worry the same judgement and discrimination I get from society will also come from other writers, potential agents or publishers who might think I’m not a real writer because I don’t write enough or in the right way, or I don’t have the right mind-set and aspirations. 

POVERTY

All poverty means you are consciously prioritising survival every day. Add serious health issues into that and survival takes up most, or all of your life. No matter how passionate I am about writing, survival will always have to come first. Like many disabled people I rely entirely on the  welfare system which is corrupt and badly managed. I speak about this from experience. We rely on the safety net but the safety net is extremely unsafe. If I fall through there is nowhere else for me to go.

One other stark reality of the welfare system is that as much as the media and politicians like to tell the “real world” otherwise, the system is not set up to allow disabled or ill people to have a positive outlet, such as writing in their lives. The government has no understanding of how chronic illness and disability works and no interest in our worlds/lives, or our intrinsic value and quality of life. Essentially the system dehumanises us in multiple devastating ways. They limit us, rather than support and encourage us, in multiple ways.  It is a binary system whereby they assume you are either entirely disabled (where it is assumed you have no type of hope or ambition or desire to do anything outside of survival), or you are temporarily unwell and planning to build yourself back up to paid full time work in a couple of years. It is very difficult for people on disability welfare to pursue writing. I will give a couple of examples here because I do think this may be important for the industry to understand. 

So what happens if, (due to limiting all other aspects of their lives including personal care and social interactions), a person can write 500 words a week. Does that mean they are getting better and can work part time? No, it doesn’t. Will the DWP see it that way?  If they think your writing is proof you can work, you would be forced to give up writing in exchange for paid work. You will also get a big chunk of the money you rely on to help maintain your health well enough to be able to do that small amount of writing, taken from you. People might ask, how would they know? You have to report every small change in your circumstances whether that’s income or changes in health. That will trigger a reassessment. 

 When I was able to work part time earlier in my illness, I had my top up money taken away because I hadn’t managed to get back up to full time work within the requisite time frame.  When I asked them, in tears, how I was supposed to support myself, they said I should stop working and go back onto disability welfare. When I said I didn’t want to stop working and I wasn’t ill enough to meet that criteria they had no solution for me. 

I considered doing self employed work, (not writing at that point but for arguments sake let’s say it was),  because it would have been easier to manage around my illness but they told me I had to be earning a certain (high) amount of money per week or they wouldn’t allow it. I don’t know if things have changed since then, as it’s been a long time since I’ve been in a position to even consider work. From stories I hear I don’t think much has changed. In fact it may even be worse. The self employed rules now seem to say that if you are self employed, they will assume your income based on the idea you are working full time rather than what you actually earn. This then affects your ability to claim other means tested benefits as it is assumed you have a much higher income than you do. I remember many self employed part time disabled people in tears, having to give up work they loved because they could no longer afford to do it. So I hope from this you have an idea of how the benefits system is a huge barrier for anybody who would like to write as a part time career. 

Any income is problematic because any money we get is taken off our benefits, which is fair. However,  if we have more than a certain amount we will suddenly have to  contribute towards our care cost which we will unlikely be able to afford. As already discussed, if we have to register as self-employed the situation is even more dire. By making money generally, we often become even more poor than we already are and cause ourselves a lot of admin and distress.  Getting paid for writing might not always be a good thing for us, despite living in poverty. 

So you see, this is chronic illness. This is disability. It’s not how most people seem to think it is, those who think of it at all. I think society has done a very good job of making us invisible or at best to be pitied. At first I shied away from sharing it here, wondering if I should say the things I thought people would want to hear. “Yes I have challenges but with a few adjustments by myself and you as an industry we can make it work!” and you would all say, “oh isn’t she so brave and inspirational, overcoming the odds, fighting to get that publishing deal”. I know anything other than that is disheartening for all involved but I made a pact with myself when attempting to process the trauma of the past 20 years. I would start speaking my truth and stand by it. I’ve been told my reality can’t be true so many times I have started to believe it. I believed that it must be ok to be treated this way because that’s the message I was given. No more.

What would help overcome those barriers both within society and the writing/publishing industries?

This is a difficult question and it comes with the disclaimer that I can’t speak for all disabled people in all our diversity. I can only speak from my perspective. Another disclaimer would be that I am new to the writing and publishing worlds so I do not know all the things you already do, I can only go by what I have seen so far. I really appreciate the bursaries and commitments to accessibility for underrepresented people that many already offer. These are vital and so helpful. Sadly though this won’t be enough if you want to access some truly diverse, authentic voices. For us to overcome even close to the full extent of the barriers we face we need different kinds of support from both society and the publishing and writing industries. I have no easy answers, we live in a society that deliberately excludes and devalues disabled people. It is hard for me to imagine a situation personally where I would be comfortable with having to re-enter a world that is destructive for me. These are the key issues.

Society

The first stage in helping us overcome these barriers to being a writer is for mainstream society to understand the reality of our situation, what we go through on the margins of your world, because of your world. Value us and our perspectives. see all the positives we can bring to your lives, the changes we can make and the ideas we can bring. We are a huge percentage of society and within that we are extremely diverse.  It also looks by the way like you need people like us, because the ‘normal’ world would appear to be crumbling and breaking down in every possible way, so what have you got to lose? Let us help and be open to our new perspectives and ideas, chances are you will be amazed by them. We have the ideas that you couldn’t possibly think of because they were different to you, and yet the same.  We also need the decent people who live in your world to wake up, see us, understand how we are being harmed and demand change. I want you to want us to be part of the same world as you. I would like you to help us to create a world where we all have the same opportunities and rights. Many of my barriers as a writer are due to the way society misunderstands and undervalues me. Helping to change that, just as members of society, would be a huge start.

Industry

I suppose that leads us onto what the writing industry can do to support us. As I’m sure you’ve gathered by now, there is no quick fix. Some barriers seem unsurmountable. The industry seems  rigid and inaccessible to me and people like me. Any accessibility interventions offered, although undeniably helpful, are only tinkering at the edges of that system.  I believe the barriers need to be removed in a bottom up way. Starting from how we are perceived and treated in society. I hope that by talking about these issues I can at least make you aware of them which is a first step. Maybe you can come up with some creative solutions. 

The first stage is  asking yourselves if you want to do the work to overhaul the way you do things in order to allow more marginalised people access. You can only answer that question if you know more about us. Our stories are valuable and interesting so step one would be to listen, learn, believe and understand our realities in all their diversity.  Appreciate what we have to say about society and people. Understand how we can give you new and exciting perspectives and ways of story-telling. You can’t support us until you understand us, who we are and what we go through.  Social media is a good starting point, you can find all kinds of marginalised communities there. You can also amplify our voices using social media. Get people aware and interested in us. Not all disabled people find social media accessible so you won’t find us all there by any means but it would be a first step. 

Beyond that, like a lot of marginalised people, we want to be given a platform. To do that you will need to think about accessibility in all its forms, in order to provide us with equity. Ultimately I believe that might mean a change to the way the publishing industry is run. 

From my perspective as a new writer, the writing/publishing industry seems to centre around a complex, rigid framework of systems and rules. Only the writers that are able to navigate that obstacle course stand a chance. As a new writer my view is that this is due to capitalism, efficiency and making as much money as possible being the prime focus. 

The publishing industry of my dreams would be a person-centred one rather than a system-centred one. You start with the writer and build everything around them. You discover the voice and then work out how to get that voice heard. Maybe that seems unrealistic but honestly I’m not sure it is. Writing is a creative industry after all. I hope that in an industry that should be about creativity, it isn’t unrealistic to hope for a system where quality, innovation and diversity comes before  what is a safe bet to make a lot of money.  Surely it is possible that one day it could shift away from a capitalist model and into more of a creative one. I hope the whole of society will move in this direction one day and then it will be natural for the publishing industry to move with it. The way society and industry is functioning now is leading us into disaster on multiple fronts so a change would hopefully benefit far more people. 

Some things that I think could be helpful in the shorter term are

Allies- We need allies. Speaking for myself, and I have heard the same from many other disabled people, many of us don’t have allies, quite the opposite, disabled people tend to lose people from their lives exponentially the more disabled they become. Imagine how hard it is to want to speak your truth when you have no evidence that anyone will support or validate you. The only evidence you see is that people will respond by making you feel worthless and dehumanised, or tell you you should be dead. I would like support to create a world where we can feel safe being heard. Even better, one where we can feel included and valued. The writing and publishing industries could help with that, find us and then amplify our voices. There are numerous other ways one can be an ally, too many to express here. Continuing to wear a mask in indoor spaces is one simple way to be an ally that is current right now.  One I will briefly mention as it is especially pertinent to this industry is language, to be an ally it is important to understand how it could either alienate us or make us feel safe and understood.  There are more obvious slurs to be aware of, obviously but even language that is deemed “correct” can be offensive. There seems to be a significant discord between how non disabled people want to speak about us and how disabled people want to be spoken about. Different disabled people will have different views and reasons. Consider reading about the social model of disability but also read about how some chronically ill people might feel differently and why. It would be useful to have a background understanding of the issues we face around language but the most important thing is to  ultimately have a conversation with the disabled and/or chronically ill writer you are working with and listen to their personal thoughts.  An example is, most publications and organisations insist on referring to disabled people as people with disabilities or austistic people as people with autism. Both of these can be offensive to some (not all) disabled people. If you are willing and able to be an ally to disabled people and you want to dig deeper, please make sure anything you read comes from actual disabled or chronically ill people, not non disabled academics, carers or medical professionals.

Accessibility- Think about accessibility and what can and should be done within the industry right now. Some examples of things to consider would be: If you are part of a local writing community, how accessible are you for disabled people? Are your meet ups all at the same time of day? (I am unable to function at certain times of the day for example). If your meetups are in person, are they wheelchair accessible?  If you work in the publishing industry, do you have flexibility around working online versus in person, even for promotion? Is there flexibility around deadlines? Would you have honest conversations with disabled writers about accommodations they might need? We are likely to say we are capable of things we aren’t because we are used to being rejected if we can’t fulfil obligations in the way non disabled people do and we won’t want to sound negative. This won’t end well for either side. Linked to this, some of us may struggle with spelling and admin related tasks due to our disabilities. I know I do. What that means is a huge amount of energy is spent trying to get that side of it right because I find it more difficult. That means even less energy to spend on actually writing. If we do get to the point where we are speaking to people from the publishing industry it would be helpful if people understood how mistakes might slip through no matter how hard we try and not hold it against us.

Understand how and why we might be traumatised by telling our stories and being seen- Understand the risk of prejudice and recurrence of trauma involved in telling our stories. I know from experience that people usually don’t want to hear new perspectives from marginalised people/ people perceived as having less value and I know what that means for me and my sense of safety.  For me personally would manifest to you as seeming unenthusiastic about goals and relatively unambitious.  

When I say I risk being retraumatised by a simple interaction, I don’t just mean triggered, I mean that by putting myself in “real world” situations, I am putting my physical and financial safety at risk. I may require a degree of anonymity for example, to feel safe. I am sure there will be simple adaptations that can be made to mitigate some of this if you are able to have that conversation with us early on. We need to be sure you are a safe person to have that conversation with because, until I know otherwise, I am going to judge everyone based on how society treats me and misunderstands me. On top of how that affects me personally it can also lead to people pleasing and trying to fit in which means less authenticity and honesty about limitations which will not be conducive to a good working relationship.  Please let us know if you are safe to have those kinds of conversations with. Be trauma informed, this may require training. We may not all be traumatised but many of us will be and this applies to all marginalised people not just disabled people. I believe truly trauma informed practice is one way we can build a bridge between your world and ours.

Poverty – many of us are unable to work and therefore don’t have extra money to spend. Any bursaries or heavily subsidised opportunities are appreciated. Maybe consider where you promote these opportunities, I feel intimidated by engaging with writing communities for the reasons I have already discussed, so if you only promote these opportunities there you will likely miss those of us most marginalised. You could think about coming to our spaces, our online communities and support groups. Things like online support groups for disabled writers would be useful especially if trusted people from the writing industry could drop in for advice and support. It would also be a good way for you to look out for interesting writers and stories. I honestly don’t know how to address the issue of writer income and especially in relation to disability welfare. All I can say is be aware that there are complex issues and be sensitive to that.

Understand our diversity. You can help by being aware that all our realities will be different.  There is huge diversity within the chronic illness and disability communities so don’t assume anything, defer to us.  Some of us don’t experience as much exclusion as others. Some of us are disabled with multiple conditions which affect us in different ways. Some disabled people are more excluded than others, purely due to the type of disability they have. Some are disabled from birth and some become disabled at some point in their lives .A huge number are intersectionality marginalised. All these things and more can dramatically affect how excluded we are and also affect our perspectives and experiences. We are far from being an homogenous group. 

Privilege– Be aware that currently it takes privilege to get to a place where we can even make you aware of our existence. Privilege has undoubtedly been a factor in the rare situations where I have received help, whether its access to occasional funds from family to pay for a one off Specialist appointment or by just being white, educated and well spoken. Without that I would not be in a position to be able to think about writing. I might not be alive. If you want to hear our voices, it’s important to understand how inaccessible many of us are to you.

Be aware of and alert to disability and illness tropes. These tropes are enmeshed in society and literature. They are a view of disabled reality from a non-disabled perspective but because no one hears our actual voices they are accepted as disabled peoples’ reality.  Their purpose seems to be to make people more comfortable with our existence. That we have some sort of purpose within the capitalist world since they believe we cannot contribute economically. The irony is that a great many disabled people do contribute to the capitalist world and their realities are entirely erased too. They also exist to comfort people into thinking it couldn’t happen to them and if it did their strength of character would make it OK. The tropes also seem to exist as an “othering” technique, they are rarely told through our authentic voices but instead usually from the perspective of non disabled people. 

I’ll describe some here so you know the kind of thing I mean. First up is the classic trope of the inspirational disabled person. We call that “inspiration porn”. The story of the tragic disabled person, the person who has achieved amazing things despite their circumstances. This reiterates the concept that it’s up to the individual to overcome their personal issues and that those disabled people who do well have done it through their own grit and work ethic. Those disabled people who don’t do well by society’s standards have the wrong attitude, haven’t tried hard enough and therefore must be OK with their lot. There is little acknowledgement that many or most of our issues are caused by society.  It tells you that we could all be OK if we pushed ourselves hard enough. I  bought into it myself in the earlier years of my illness. I was only aware of the tropes I had no idea about what  chronic illness or disability could be outside of them. Grit and determination can be useful in certain circumstances but it can also be damaging. A quick example from my life. I was told after neurosurgery that there was very little chance I’d be able to walk properly again. At first I took that to mean there was a small chance and I would be a “bad disabled person” if I didn’t focus everything on taking that small chance. However, due to my other conditions causing me some serious issues when attempting this, my physio helped me see that the most important thing was to make the best of my life as it was. Society was telling me walking and being less visibly disabled was me making the best of my life even when I was destroying myself and unlikely to achieve it anyway. Actually embracing life with my restrictions was actually better for me. Even when you do try and live up to that inspiring disabled person trope you find out the “real world” still doesn’t accept and include you, they only want you to live up to it so they don’t have to see you as disabled anymore.  It’s also  patronising. Non-disabled people are so caught up in believing the reason we exist must be to encourage and inspire non-disabled people that everything we do becomes inspirational including being seen in public or doing basic hygiene tasks. It says something about how society erases disabled people that people who see us out and about existing decide we must be so brave to do that.  We shouldn’t have to be heroes, we should be able to do these things easily. Instead of calling us inspirational, maybe people could make it easier for us to be included. 

If you aren’t going to be inspirational then the next trope is the tragic disabled person. The worst has happened and their life is no longer worth living or they have a terminal illness so they are sacrificed by the story to teach the people in their lives how to be grateful for what they have. Firstly, ill and disabled people can live long, valuable, full lives. We don’t always die. Secondly our lives aren’t a tragedy, they are lives just like yours, just as important and valuable as yours. We don’t exist to inspire you or teach you something about yourself and your lives. We exist for us, to live our lives the best way we can. Just like you. 

If you are not inspirational or tragic then the third common trope is the hypochondriac, the faker, the person who uses illness as a way to manipulate people. Based on my personal history I’m sure I don’t need to spell out how unrealistic and damaging that one is. Linked closely to that is the disabled person who is so traumatised by the unfairness and difficulty of their situation they turn bitter and evil. 

I can’t recall coming across a story about a disabled or ill person that hasn’t fitted one of those tropes. 

Linked to tropes is the standard story structure, the hero’s journey in its classic form is one example. Happy endings are other. Disabled people’s lives and stories often play out differently and that can cause people to misunderstand and devalue us because our lives don’t follow a story structure they understand. Normalising different story structures would be a way you can help us overcome that barrier. I think this is an issue for marginalised people in general. This is a complex one but marginalised people can’t rely on the idea of happy endings, even if they are just temporary. Often it just doesn’t work that way for us.  Happy ending tropes when they involve disabled people usually involve us being able to be more accepted in your society, a magic cure maybe or the happy ending is actually for a non-disabled character who went through the trauma with the disabled person and it taught them so much. Speaking for myself, that classic story structure doesn’t fit my life. My life is more about creating magic in usual places, moving through life in unusual and unexpected ways to make life work for us, learning about ourselves and others, making internal connections, revelations, and awakenings. Finding new nuanced emotions and ways we can feel satisfied in the moment,create peace, no future happy ending, no dwelling on the past just making something of now. These are exciting and interesting ways of living but, I assume because they don’t fit the classic story structure, they don’t get told so much in relation to disabled people. If our stories aren’t told in an authentic way how can we ever be accepted and valued? We will always be feared and pitied.

 If we don’t neatly fit into one of those two tropes we don’t exist for you. You have no way of understanding what our lives are really like, you either assume we do fit into one or the other or you erase us. Those tropes are not our reality, they do not represent us. They are who you want us to be, how you see us. They are our stories as you see them. but they are not who we truly are and certainly not what we have to say. Those are the stories we have to pretend to embody if we want a small chance of being accepted in your world. For all your best intentions the writing and publishing industries are in that world. It does not seem possible for me to access that or after all I have experienced, to even want to access that. 

How do you manage your illness on a day to day basis?

This is tricky, because it has meant different things to me at different times and is always adapting and changing as my illnesses and disabilities do. Right now management takes up almost all my time and energy one way or another. I’ll try and explain a few overarching tools that are always important for me. I have been ill/disabled for 20 years and in that time have occupied different places on the spectrum including being able to work part time, do basic housework and have a bit of a social life to being in and out of consciousness and close to death. Currently I am generally, more stable although severely symptomatic, a full time wheelchair user, housebound and reliant on full time care.

My goal as a disabled person is to live my best possible life. Therefore, how I manage things is based on who I am and what I want at any given point. This ties into my two worlds theme. If you choose (and it is realistic for you) to aspire to get back to the real world to some degree, your life and management will be very different to someone who decides to accept themselves and their situation as they are, on the margins and then to find purpose, value and joy within that life.  I have been both of those people over the past 20 years and my chronic illness management has varied a lot to fit in with that. 

Currently, due to the severity and permanence of my disabilities my mindset has switched from chronic illness management to life management. My illness and disability is ever present. I can no longer temporarily put it to one side or fight to put a mask on as I used to. It is infused into my life and my being, not just a separate part. This is why I have been excluded from the “real” world. I can no longer  fake it for short periods like I used to. What that means is I’ve had to  create a world for myself where I am a success based on my own definition. I do the best I can at accepting and managing my symptoms, I find as much positive input as I need from whatever sources I can, I fulfil my personal goals in a way that makes sense in my world. It is not goal driven or based on anyone else’s judgement, it’s purely based on how well I am managing myself, as I am as a complete, rounded human being. To the real world I get the message that I am seen as someone to be pitied. In my world my life, experiences and achievements are just as important and valuable as anyone else’s. 

Prioritising physical and mental health 

Whatever position I find myself on the illness severity spectrum I have to put my physical and mental health first. This may seem like a no-brainer but in the real world we generally don’t have to make much of an effort to do that so it takes some thought, commitment and mindfulness.  There are many aspects to who I am but the reality is if I don’t manage my health optimally I don’t stand any chance of being able to express any other side of me.  Practically, that means planning and attending doctors appointments, managing treatments and therapies day to day, having surgeries, resting, managing symptoms, just existing with overwhelming symptoms, seeking activities and therapies that help soothe both physical and mental health symptoms, dealing with structural difficulties in my home, society or relationships as much as possible or using support groups. 

My aim is some sort of stability whatever that may mean. It can mean stability at a low level of functioning and a high level of symptoms as it does for me now. The key is, my lifestyle needs to be sustainable. I don’t want the way I live my life to be a contributing factor in a worsening of my health. Before I can do that I have to make sure I do everything I can to get a handle on anything acutely life threatening or progressive that destroys all quality of life. This can involve only focusing on my health for many years for bigger issues that need dealing with. That is fine because health has to come first.

Next, I have to be realistic about my situation, for example, there is no point making three conditions worse in an attempt to improve one for example and if that’s even possible/likely. There is always a risk/reward negotiation I have to do when I consider a new treatment and intervention. I have learned sometimes it’s OK for me to refuse a treatment if I decide the chances of it triggering a different condition is too high.  Again it depends on your situation but for me with multiple different, not well understood conditions. I know my overall situation best and I make the final decisions.  

Being realistic can mean making sure I have time scheduled in your day or week for treatments, rest etc. Even if my brain tries to trick me into thinking I can just do the thing I want to do, it’ll be fine (it usually isn’t).  What It always means is if a symptom or issue is flaring up or ringing alarm bells I aim to drop everything and get it under control (as much as is possible). I say aim as with everything perfection is far from possible, I can only do my best. 

As part of my life I have to keep myself updated on all my conditions as the particular conditions I have are not well understood by most doctors. For this reason I do not have regular clinics and check ups with my doctors unless there is a specific on-going issue or treatment with one aspect of my health. No one oversees me. It is my responsibility to be my own doctor. I do the research, find specialists, decide who and when the right time is to ask to be referred (and hope my GP agrees), do my own risk reward analysis for suggested treatments. Without a specific medical team behind me obviously my choices are restricted and I have to come up with alternative solutions to manage my situation myself. This all takes a huge amount of time and energy, of which I have very little.

Energy preservation and management /Pacing

 Sometimes this is the only thing I can do when I am at my worst and that is OK. At certain points of my illness I have spent weeks or months just in and out of consciousness unable to even think straight. Other times I have had more flexibility with my energy. At those times knowing what I’m saving those little moments of functionality for is important. What are my values and more importantly what am I realistically capable of? At the moment, that is writing, in the past it’s been my friends or partner, or at a different point even part time work. I can’t ever find the energy to do all the things I would like to in an ideal world so generally I pick one and devote my attention to it and try not to waste energy feeling bad about the things I can’t do. One of the cruellest parts of chronic illness for me is that my brain isn’t always in tune with my body and wants me to do things my body can’t. It also always thinks it knows best. My brain thinks that if I really want to do something or it’s positive in some way then it won’t harm me. My brain thinks that if I just push myself that bit harder I’ll overcome my physical issues. My brain thinks it is ready to do something else now and it’s powerful enough that pure drive will be enough to heal the body, or at least overcome symptoms stopping me doing what I want to do.  The difficulty is, like anyone else, sometimes we do have to take a risk and push ourselves out of our comfort zone and it can pay off, unfortunately, in my twenty years more often than not, it has caused long term  harm. That doesn’t always stop me but I have had to learn how to manage this issue. 

Whatever I try, whether it’s treatments, therapies or new aspects to my day,  I have to start really low to counteract the unrealistic beliefs of my brain.  It’s tough, once I have found something you want to do whether it is chatting with family, sitting outside, watching tv, reading or trying to bring something in like writing- you just want to do it as much as you want. My body doesn’t like that and it will let me know!  

Pacing as a technique to manage chronic illness is something that’s talked about a lot and there are many ways to approach it. It can seem quite rigid about the right and wrong way to do it. I’m sure there is absolutely an optimal way but that rarely fits in with people’s lives or the way they want to live them. It took me many years of attempting to do pacing in the right way, switching between short bursts of mental and physical activity with short rest breaks in between. Maybe for some people that yields good results but it makes me miserable. My neurology isn’t wired that way. I can’t keep switching from one state to another that often. Instead of that I tend to, if I’m well enough, do any mental or emotional activities in the morning, and rest in the afternoon and evening. Alarms can be useful if I’m doing something I might get hyper-focussed and lose track of time. 

I am unable to do much in the way of physical activity but things like physio stretches I do just before I start my rest session in the afternoon. I also do the two sessions in different places in the house in order to help me switch modes (something I find very difficult).   The routine aspect of it is good. It makes activity predictable and stable which can help stabilise energy to an extent. I’ve learnt as long as I am gentle about how I approach my routine it works ok.  Gentle means not being rigid about sticking to it if things crop up but also setting limits on how much time I can spend on something. It’s hard when you have had to be a driven person for most of your life to switch to gentle mode but after 20 years I see how important it is. Like many disabled and other marginalised people l have experienced being a failure in the “real” world and been judged for being lazy and “not trying hard enough” that I instinctively want to prove myself. In my world I have to remind myself I don’t have to do that, I just need to be the best version of me, as I am, and being gentle with myself achieves that. This is my approach to writing. It can be difficult when my brain is full of ideas and wants to get them out despite how terrible I feel or how much pain you are in. However if I do that l find I then go months not being able to do anything positive while I recover and then it’s also much harder to get back into it. The thing I enjoy becomes a threat, something that makes me more ill. Sustainable practice even if it’s much less than I’d like means I can have that positive energy in my life more consistently. 

Another aspect of energy management is finding ways to do things I have to or want to do and thinking of ways to do them in a more energy efficient way. Some examples are: 

Doing them less often-For example I only shower once a week. Showering is one of the most exhausting things I can do. The real world tells us showering daily is a fundamental necessity but in my world, it isn’t. My health is the most important thing and although there are pros and cons, ultimately my health is made worse by showering more than once a week. I would rather use that energy on something I love (writing) than on something I feel I have to do but gives me little benefit (showering more often)

 Delegating -I am lucky I have had carers to fall back on when I’ve been at my worst, delegating is hugely important especially if it’s a task that I could do in theory but would take all my energy and cause me harm, for example online grocery shopping which someone else could do without too much effort.  

Changing the way I do things- doing things in stages rather than all at once, using aids/adaptations (braces, recliner chairs, special crockery and cutlery, pillows, shower chair and wet room are some examples), using email instead of phone, dictating into phone rather than typing, getting lost in imagination, using social media or watching TV instead of reading for inspiration  

Letting go of some things- Some habits, beliefs, goals, people or commitments we hold on to out of habit or a sense of responsibility. It can be scary to let go but at certain points for me it’s been vital to preserve what tiny amount of energy I have. Sometimes there are things I cannot change and part of the work is accepting that reality even if it means I can’t do what I truly want to. The reality is the reality and the trick is to find value and esteem in whatever I can or can’t do. This can take a lifetime but for me it has been an important focus. 

I had to unlearn being a worker even though this is ingrained in me from childhood as someone from the working class. In the earlier stages of illness my ultimate goal was to get back into the old world to some degree, to live up to those expectations, work hard, get better and have goals that will allow me to fit back into society. It has taken time and even at times, encouragement from  medical professionals to truly live in my world. I’ve had to make hard choices such as whether or not to try and walk again. I was told that it was unlikely that I could learn to walk again after I had neurosurgery so I felt that because I hadn’t been told it was impossible I should put all my energy into trying to achieve that goal. The reality was, due to my other medical conditions being so severe, I could not do even close to the amount of physiotherapy needed to stand a chance of meeting that goal. I was still determined though and my physiotherapist had to gently tell me I could waste my time, energy and probably destroy my health even further on doing that or I could divert my energy into my world and create a nice a life as I could for myself as a wheelchair user. It made perfect sense but the “real” world energy was strong and you are supposed to fight to do the “right thing” which is to be as close to normal and acceptable as you can be, no matter the cost to you. My way won’t be everyone’s way, some people have to be in the real world  and people can choose to be.  

Boundaries- I have a history of trauma so boundaries have always been tricky for me but healthy boundaries have turned out to be important. It’s so easy to go along with what others want especially when we don’t feel safe in our bodies and situations. Being long term ill and disabled is also steeped in a lot of shame sadly and that can encourage us to do things we don’t feel comfortable with because we don’t want to feel shamed. Boundaries at different points in my illness have been things like 

  •  how often I can do certain activities 
  •  what I can or can’t do socially 
  •  what time of day I can do things  
  • reserving the right to change the boundary at any time if my condition changes even on a day to day basis.  
  • How I want to communicate 
  • how often or how many people I can see 
  • whether I accept hugs or kisses  
  • whether I see people who are unmasked or unvaccinated. 

Symptom management 

My symptoms are wide ranging and severe, management happens in multiple ways, (preventative, routine, acute and urgent). Some of the things I do on a daily basis are; liaising with my partner who is also my full time carer to discuss what I need that day

managing supplements, medications and other treatments

resting a lot

tracking my health to ensure I am doing the right things taking care of my mental health. 

Sometimes there are tricky situations to manage, for example writing can sometimes help with mental health issues however it has to be the right kind of writing and I have to be aware of the negative impact it might have on my physical health. Often with chronic illness there is never one good solution to helping symptoms, there are always pay offs and a big part of my life is assessing and managing which of my symptoms to help potentially at the expense of other symptoms. Perfectionism is the enemy of symptom management. You just have to do the best you can and I’ve had to learn not to think in binaries, ill and well. Because I have multiple conditions the “ideal” is usually somewhere in the middle because treating one condition can make another worse and some conditions are more receptive to treatment than others

Tracking –

This is a really useful tool as it keeps track of how well I’m managing myself and what changes might have helped or hindered me. If I’m going downhill I can see what might have caused it but balancing the time/energy spent tracking with its benefits can be tricky. Sometimes tracking can be asking a family member to tell you if they think you’re doing better or worse. It can be using a smartwatch or just tracking in a diary any interventions/changes and how you felt once a week. I do a combination of these and have a spreadsheet I update weekly with an overall score of how well I am as a bar chart and then notes about things I did or treatments adjusted within each bar. That way it’s easy to spot long term trends.

Dealing with agencies/doctors 

I could say a lot about this but all I’ll say is dealing with benefits agencies, social care, wheelchair services, the medical profession has been difficult and physically and mentally destructive. I have seen amazing people in all these areas who have been good people who have helped me enormously but that is not the norm. I don’t need or want to go into details here. If you know, you know. If you don’t it’s another one of those two worlds things. What people perceive of these entities from the outside is not what we generally experience on the inside, especially, as with everything, for those who are intersectionality marginalised  Sometimes you cannot avoid dealing with these agencies because your survival depends on it. I have learned to accept that when these things need to be dealt with I may not be able to do anything else in my life and my conditions may deteriorate. It’s not right but it’s the reality. In these situations I put all my focus onto dealing with them and employ all the self care techniques I have. 

 Because physically and mentally engaging with these agencies has caused me serious physical and mental harm multiple times in the past,  I sometimes make the choice not to seek help because the cost of the process of dealing with them is too high.  This goes back to the risk/reward analysis I spoke about earlier.

One of the most important lessons I learned through these 20 years and the first thing I say to anyone at the beginning of their journey is, get your medical records and test results and if you can, learn how to interpret them properly. If I had done this in the first few years of my illness I would have picked up on things that would have dramatically changed the course of my life. I cannot overstate how important this is. I know this can be tricky for some because you do have to be unemotional about how you interpret them and understand which out of range tests are meaningful and which aren’t. I am lucky that this is something I am good at. I think in most situations though, this is a good management technique. 

It was important for me to understand the limitations and biases of my health care system (the NHS). I didn’t understand this when I was first ill and put my faith in it wholeheartedly. For me, it works better when I understand the ways it can help and the ways it can cause harm and negotiate it accordingly. It would be nice to think that I could just let them look after me but I’ve learned from bitter experience that it just doesn’t work that way. I pick your battles, I understand the situations where I am safer to trust the medical professional and I also understand where their weaknesses and biases lie and do my best to avoid those situations. The power structures within the medical profession always place the patient at the bottom. There is not much I can do about that but being aware of it is important. There are many situations where, due to my own research I have more understanding about something than my doctor. I have had doctors pretend to know better than me and tell me things that are dangerously inaccurate just because they didn’t like me knowing more than them. Bringing research papers or referring them to their own guidelines can be useful. When I know I am right about something and it’s vital to my health I will insist they look it up in front of me. When they realise I am right they back down. It shouldn’t be this way but knowing it can only be beneficial for patients. This is not meant to be taken as advice, this is just how it works best for me. 

Peer to peer support 

This has been life changing in how I manage my illness, particularly online groups. I’ve been careful about the groups I choose to be part of and am discerning about how I interpret other patient experiences but honestly, these groups are invaluable in showing the reality of what it’s like living with a condition, you can’t get that kind of information from a doctor or a research paper. I use the information I get from these communities alongside peer reviewed research, my own experiences and information from specialist doctors. 

At times it has also been a way I feel like I am giving something back. If I can use what I’ve been through to help others in some way it feels good.

I love the concept of synchronicity and on my twitter account in the last few days I’ve seen threads from the chronic illness and writing communities talking about some of the things I’ve been talking about here. That gives me hope that it’s not just me, that maybe we can shine a light on some of these issues. It’s given me the courage to speak my truth even if it seems negative. I have no positive quick and easy solutions. The truth is there are none and it’s nice to acknowledge that not being able to find them doesn’t make me a failure.

Footnotes

* There are differing views in the disability and chronic illness community about whether those terms are directly interchangeable but for me there is a nuanced difference. It is possible for someone to consider themselves disabled without being ill, also you could have a chronic illness and not feel disabled by it. For me personally the word disabled covers both my disabilities and my illnesses so I tend to use that term to cover everything.

An epiphany and some things I want to say

A little update: since writing this, I’ve signed my contract with Unbound to crowdfund – cross everything – a book on writing that has evolved partly as a result of my coming to understand what was good for me. The Alchemy. I have also signed for a year with Jericho Writers to teach on their novel course. It is good. There are two further short books to edit and complete, but I will no longer be pushing and exhausting myself or querying articles and I am hopeful but realistic about whether my new novel places or not. I am a bookworrm: that is who I am. That is enough x

Back to the original article!

I had an epiphany earlier in Nandos. You can have an epiphany anywhere, of course. I was with my youngest, who is ten and he is a sweet soul and likes to take an interest in the old girl so he says to me, ‘So Mum. How are your books going?’ Today, that brought me up short. There is a lot going on for our family and I spent the morning with social services and outreach services. I’d taken him out for a treat because he’s such a sweet boy, never complains about anything and he often has to take a back seat because the amount of time you have to give your kids or big kids may not be equal: one or more may need you more than others.

The epiphany was that, already tired, I realised how happy I was to be there, right now, with my chirpy, caring kid and also how exhausted I was. Then – I couldn’t just have one bloody strand to this epiphany, could I? – I thought about the books and realised that I’d pushed, pushed, pushed; constantly looking for opportunities and trying to knit things up and build a profile. Articles, columns, a variety of texts. I LOVED writing all of it and I have loved the teaching and the friendships I have made and all the wonderful books I’ve discovered and then…well, the rest was too hard for too little reward. I am immensely positive and energetic about things, but I have a context and I realised I needed to honour it.

I have to scale back. I am a mother of three kids and there are some hefty SEN needs in there and while I am all about empowerment, I will need to be vigilant for some time to come. Part of the reason for this is that we have been failed – in fact entirely counter-productive action taken in some cases – by a school and various health services and as a result, strategies and aids were not put in place and things not learned. It’s always been me and it’s still me. I have had to think hard about this lately. I am also, not helped by our experience and the hyper-vigilance which it has created, finding that chronic health conditions are worse. So I have to work out what to let to go. I focus on my teaching, on which new direction news soon, my kids and health.

What does that mean in terms of writing? I had been really tough about yoking art and commerce and doing all that, but I cannot do it any more. Not at this pelt! There are things coming and things to announce, but I will do my best, for a period of well organised time and then that’s it. I cannot push to promote my work constantly if the publishers of that work are not, ultimately, terribly interested in that work or in me. Also, if my ten year old wants to make something with Lego with me, I won’t ask him to hang on because I am submitting an article to someone who will probably never acknowledge they received it. If I send a book independently and don’t hear back, or I am ghosted, or – this is the bit I didn’t know about – things are not replied to when a book goes on agency submission, then so be it.

I have been a huge bookworm all my life and I love to write and always will. I didn’t start to write books until six years ago, and it has been an adventure, but also difficult. Not the writing, but the no-replies, the work that wasn’t championed when I gave my all, that kind of thing.

So, read as much if not more, prepare the books I have scheduled to the best of my ability, enjoy spending time with other readers and writers, but as a thing of joy. I don’t think I will be submitting articles or querying anything else now; just slowly and gently what’s in hand, but with the focus on hope and enjoyment not success or even all that many expectations, really. I don’t think ambition or trying to make a career in writing has served me well, but I know that reading and developing my writing have, and teaching and looking after other people. So I am going to focus on enjoyment of writing and if a book places, with my lovely literary agency, great. If it does not, then I have Lego

And epiphanies in Nandos. The picture at top was the one my beautiful boy took of me.

And I recommend the peri-peri chips.

The road less travelled. If your young person is struggling…

While this site is about writing, I am also a teacher, young people’s mentor and a mum of three and, this afternoon, was in a discussion in a support group with parents experiencing anxiety and grief because their young person or young people has not done or cannot do what they see their peers doing because of mental health problems – perhaps together with SEND and physical ill-health, because these things are often intersectional. Without offering specifics here, I really understand this because I have been and am going through it. If your beloved child – and we were talking about older children and very young adults – cannot leave the house, will need permanent support, has come out of school under trauma and is or has been very well, that is a difficult situation for you, as their parent to cope with. Not because you want them to be someone else, but because you hoped things would be different for them or their lives would be less difficult. You see their peers going to parties, travelling, having jobs and going off to university and it is painful. We can try to pretend it isn’t, but perhaps that does not help. These were my thoughts to help us feel better; things that have helped me. Yours may be different, but here goes.

  1. Education is not linear for everyone. It cannot be. It has taken me nearly three years to get over having two things reiterated by those in senior positions in schools. One was that if you cannot cope with school, you would not be able cope with college/university/a job; the other that you should not let your peers go past you. It has, I am sure, taken my young person a while to get over this too – but they did better than me! I am absolutely sure, and my background informs me, that this binary view is not true. Lift your sights and have faith.
  2. Some problems take a lot of time to get over. Help is not forthcoming for many families. It was not for ours. But time and love are an awesome couple. Some young people take longer to find a point when they are happier in their own skin, steadier and better able to cope. Also, see point 2. It is hard, but this is not a race.
  3. You may look at lots of bright and confident young people – and they are great; of course they are! – but stay in lane and remember that comparison is the thief of joy. Focus on what you have and that there is one key thing you might remember. None of us knows what difficulty we might have in life. It may be that your young person, through adversity, ends up better equipped to manage any number of things than those who sailed through. Also to have empathy and skills when other people need help. Like the bright and confident young people. None of is invulnerable. We need one another.
  4. Managing mental health problems, going through the things some of our young people have, requires immense bravery. Don’t ever forget that. And their problems are not failures: don’t ever ingest that one, either.
  5. Celebrate the small wins. They are still wins. If you heard your beloved laugh, do something with a bit more confidence, navigate a challenge, celebrate. Sometimes, you will raise the bar and sometimes lower the bar on this one and I reckon that’s fine.

There is so much more to write, and I will, I will, but for now, here are five points given with much love.

Anna x

Updates on Anna

What is currently going on?

Well, my new novel The Zebra and Lord Jones, probably best described as magical realism, is currently on agency submission and this is, of course, nail-biting! What is more, it’s THIS zebra…

BBC Radio 3 - Between the Ears, The Escape of the Zebra from the Zoo

Now, my strategy is always to be writing something, and this has meant that I am also waiting for an answer for my non-fiction proposal on gentle productivity in writing. I hope I will hear something in the next few days and if it’s a no, then on I go elsewhere! This book is called The Alchemy and, alongside it, I have applied for Arts Council Developing your Creative Practice funding so that I can, among other things, undertake some training, write the book and offer free mentoring and workshops with a particular eye to writers who are disabled, chronically ill or carers. I also recently wrote a seasonal novella (not an actual industry term, as far as I am aware!) called Her Winter Song and my agent is going to read that soon. Oooh what WILL she think?

In March, I shall be able to tell you about the big block of creative writing teaching I shall be doing….

Now that I have handed in all homework, it is time to finish my memoir, These Envoys of Beauty, which is coming out with Reflex Press next Spring and I am going to be handing that in by June as well as starting work on edits at some point for this autumn’s release, Ravished, my second short story collection. https://www.reflex.press/ravished-by-anna-vaught/ Here:

Ravished by Anna Vaught

Published by Reflex Press 

We’re delighted to announce Reflex Press has acquired Ravished, a collection of short fiction by Anna Vaught.

Ravished, subtitled A Series of Reflections on Age, Sex, Death, and Judgement, is the second collection from Vaught, following Famished (Influx). These are peculiar tales, weird fiction, gothic, unusual, full of literary allusion, threaded through with classical and Welsh reference, occasionally starring the author’s relatives and the Virgin Mary. Sometimes funny, morbid, potentially inspiring, Ravished is both revolting and pretty; both awful and yet optimistic in the stress it places on playful language and the abundance of the imagination.

Ravished will be published in Autumn 2022. Subscribe to our email newsletter for preorder information and subscriber discounts.

Annnd:

These Envoys of Beauty by Anna Vaught

Published by Reflex Press 

We’re delighted to announce Reflex Press has acquired These Envoys of Beauty, a memoir by Anna Vaught.

In These Envoys of Beauty, Anna Vaught explores her relationship with the natural world, how it fed and feeds her imagination, and how it gave her hope of something different beyond the world she experienced as a child and young person. She writes about how she oriented herself to the natural world and lived within it while growing up in a rural home; about wishing trees, talking streams, and her early knowledge of plants, animals, and botanical names; about her passionate relationship, even when very young, with foraging and what was edible, how things smelled, licking the rain from leaves, drinking, growing, and cooking.

Over twelve essays, Vaught uses her relationship with the natural world to explore themes of loneliness, depression, and complex and sustained trauma within the family home, issues that shaped her early life and continue to have a far-reaching impact decades later.

About the author

Anna Vaught - Reflex Press

Anna Vaught is a novelist, poet, essayist, short fiction writer, editor and also a secondary English teacher, tutor and mentor, mental health advocate and campaigner and mum of three. She is the author of four previous books, including 2020’s Saving Lucia (Bluemoose) and Famished (Influx). Her reviews, features, short stories, creative non-fiction, poems and memoir pieces are widely published in journals, anthologies and in the national press; she is also a monthly columnist for The Bookseller. Anna is represented by Kate Johnson of Wolf Literary, NYC.

This week, my 2020 novel Saving Lucia has featured in the Italian press. Here it is in Il Piccolo, which is the paper of Trieste, birthplace of Lucia Joyce, one of the two main subjects of the novel; moreover, the book’s style, pace and rhythm is indebted to Joyce and I have been talking about that a lot. You can hear me soon on a podcast as part of the #Ulysses100 celebrations here: https://ulysses100.ie/whats-on

Did you know you can subscribe to my newsletter here? https://annacvaught.substack.com/p/a-simple-writing-kit

Hope you like it. Here is a link to my latest column for ‘The Bookseller’ and I hope it may encourage you. https://www.thebookseller.com/comment/on-not-giving-up

That’s enough for now.

Anna x