Patient Voices

Illness Lived Experience

Creative-reflective texts in this section are created by patients, carers, relatives or friends, anyone touched by illness. Some texts are by those who have experienced illness or caring for illness directly and others by those nearby using their imagination in order to try to explore or portray the patient or carer lived experiences.

To share my health journey with the students in a non clinical way but through my art practice gave me the opportunity to show how my condition weaves into my daily life and affects all aspects of myself and be seen as a whole person, not just as a medical condition needed to be fixed.

We all need to make time to listen to our bodies, to each other, our different forms of expressions and lived experiences, close listening.

Natasha Duggan

Every life has a thread of purpose - Suaad Walker

Every life has a thread of purpose even if we are not aware of it. Sometimes it is lost sight of in the clamour of background activity. Despite many twists and turns, even apparent knots and backward movements, the thread continuously surrounds and supports onward growth, forever rising from its beginnings. My thread does not exist in isolation. It is intertwined with the threads of many others, some known, some unknown. Their threads are not merely intertwined with mine, but they provide the support that empowers and enables me to survive and flourish amidst the clamour and confusion of life.

Patient creative enquiry group, Bristol, 2009

Framed by Anxiety - Suaad Walker

Framed by Anxiety encapsulates the joy of coming to terms (many years after her death) with my much loved mother whose depression and attempted suicides during her life prevented understanding of her real expression of my love for her.
This piece was triggered by a text, written by John O’Donohue, introduced at one of the Art for Health sessions:-
‘If we could but realize the sureness around us, we would be very much more courageous in our lives. The frames of anxiety that keep us caged would dissolve. We would live the life we love and in that way, day by day, free our future from the weight of regret.’
Attendance at the Writing for Health sessions had already empowered me to write a poem about my father. Although I felt the need to ‘do’ something for my mother I couldn’t find the words or ideas until O’ Donohue’s text provided the phrase ‘Framed by Anxiety’. I initially hadn’t a clue how to put that into any kind of format. What followed was a serendipitous journey that unfolded in leaps and bounds, finding new materials, new ways of using old materials, sometimes experimenting, occasionally deconstructing unsuccessful experiments. Throughout the whole process, there was a constant thread of growing confidence due to the support from fellow attendees at the Art for Health sessions running in parallel with the development of the piece. Although I produced other pieces during these sessions they were often unrelated to the actual piece yet it benefited from techniques acquired or seen in use by others at the sessions. Attendance at the parallel Writing for Health course empowered me to write a short poem to include in the finished piece.
Facilitator comment (Dr Catherine Lamont-Robinson):
When Suaad had completed this exquisite, veiled hanging and shared its story with us, I was transfixed by her sensitive and metaphoric use of materials. As I recall, encountering a photograph of her mother, radiant in youth, was a key trigger to producing the iridescent, embroidered backdrop – worked upon a piece of heavy, aging fabric which had been in the family for years. A drape of black chiffon mostly conceals her mother’s underlying sparkle, this fabric is drawn into a small medicine bottle highlighting the role of anti-depressant medication. Finally, the framing chain released from a vintage handbag provides a perfect visual devise to pull these complex elements together.
Patient creative enquiry group, Bristol, 2007

Sixty Two and a Half Years Married… - Katynj

She is still my wife

angry, sad, dying in pain;

please be kind to her.

This is the message I felt my father wanted to give to busy staff in a general ward 3 days before Christmas as they dealt brusquely with my mother. She was not an easy patient. My father and I wanted her to feel loved and cared for, as she had loved and cared for her patients, for over 50 years. I felt his pain as deeply as my own, yet I said nothing, so as not to embarrass him. Crafting these words, following the [Haiku] formula carefully, was therapeutic. In some small way I was giving voice to my father's thoughts, bearing witness to his love, recognising that we had accepted the inevitable and wanting her to feel surrounded by love as she passed on. Is it too much to ask that by sharing these words now, someone, somewhere looks again at a crumpled old lady and smiles at her?

Katynj, Participant in a creativity workshop, 2019

Whilst Catherine was engaging patients in general practice as well medical students in the field of creative enquiry she decided to ask the patients ‘what would you like to say to your future doctors’ as she was seeing both groups in the same day. Catherine describes the silence as patients descended into deep concentration, crayon on page. This was clearly an important and empowering question for this patient group to be asked. A series of images and reflections were subsequently shared.