This week has seen the publication of a book I have been working on, with Verity Holloway and Boudicca Press, for nearly two years. Disturbing the Body is an anthology of women’s writing about their bodies – of times when things have gone wrong, fallen out of step and, broadly speaking, not done what we hope – for our visceral forms to fail to function in a way that lets us live the lives we set out to. Contributors come from a range of backgrounds, of artists and fiction writers, as well as creative non-fiction. The cover image of the book is taken from ‘Bad Head Day’ by Kate Murdoch.

On Wednesday I contributed to a launch event hosted by Five Leaves Bookshop, Nottingham – discussing themes of narrative, storytelling, and the role of fairytale, fantasy and the surreal, in the collection. We talked about chronic illness and the landscape we find ourselves in when we reach these places. We talked about Susan Sontag, Sinéad Gleeson, Sonya Huber, Maya Dusenbury and Sarah Ramey, all of whom have written about illness and women, and Laura Elliott and I discussed with Deirdre O’Bryne, why these are such important conversations to have.

Telling you this is not the point of this blog, but is I hope useful context. My piece for the anthology is called Underland, it explores the tale of Alice in Wonderland through the eyes of a person with an energy limiting chronic illness who’s voice and experience is disputed by society and doctors. One of the excerpts from the piece refers to the roses being painted, from white to red, on orders of the Red Queen.

”…I have the validation of the white roses being painted red. Nothing to see here, as the packs of cards cover the white flowers in red paint, suffocating us and denying our reality: the greenfly, the rot, the infestations and damaged stems cannot be seen, covered in paint…”

I refer to the psychiatric framing that routinely happens in medicine when a clear and known understanding is not available for a new condition. This has happened since early modern medicine – the first case of a witch trial being successfully defended is with the report of a doctor, telling the courts she is not a witch, she is mad. This was a turning point in the early 17th century, under pressure from the church for there not to be witches anymore. This saved that woman’s life, but it set a precedent, for anything that couldn’t be explained, to be attributed to madness, to hysteria. Language and words have changed over the years, but this remains at the centre of interpretations of the cause of Cancer, Asthma, Tuberculosis, Multiple Sclerosis, and anything where regular laboratory blood tests come back negative but where the patient is symptomatic (especially if this is with pain and/or fatigue), leaving patients being invalidated – gaslighted – about the cause of their illness. This delays appropriate support, treatment and lays the foundations for further distress in the individual feeling to blame for their situation. It seems ridiculous, now, that anyone would blame someone for any of those conditions, but it takes a long time to shake the impact of such harmful, undermining and negligent interpretations. The trauma of this experience yet another thing to deal with.

I have been writing in recent years, finding different ways of sharing and making sense of my own invalidating, shaming and blaming experiences of living with a chronic illness that is not well understood. I have written for practitioner journals and patient forums, I have played with form and experimented with prose and poetry, and there is more to play out here but the world has not yet changed. I know that words are important and I still have hope that language will help, but I am also returning to my artistic practice, to a studio practice, after a very long time.

My roses, a bunch of red ones bought for the launch, are my starting point. A bunch of white ones, since given by a friend, on learning of my inability to find white ones to paint began my work today.

I feel a freedom and new breath being inhaled into my work, and so a new blog to celebrate and space to develop and follow.

”But the more you protest that you are not a red rose, the greater your red rose status becomes. Suggested treatments are made for your denial of your redness. Interventions to change your unhelpful beliefs, to help you realise you are not a white rose…” Underland, p95.

Disturbing the Body is published this week by Boudicca Press and can be bought from Five Leaves Bookshop: