How to Mend a Broken Heart
Which aspects of living with takotsubo cardiomyopathy cannot be captured by the label “broken heart syndrome”? Did participants experience their diagnosis as a “biographical disruption” and does that affect their self-representation?
Postmenopausal women make up 90% of cases of takotsubo cardiomyopathy (TCM), a temporary weakening of the left ventricle that causes an acute reversible heart failure. First described in 1990, this condition was named after a traditional Japanese fishing pot with a narrow neck, which resembles the human heart when affected by TCM (a shape referred to as “apical ballooning”). While the pathophysiology of TCM is still unclear, its association with stressful events has gained it the moniker “broken heart syndrome” in both medical literature and media features – a memorable catchphrase that risks mystifying and trivializing patients’ lived experience.
What did the project involve?
This research project involved a group of postmenopausal women with TCM under follow up at Bristol Heart Institute to gain better insight into this condition, while helping them make sense of their diagnosis by means of creative activities. This project approached takotsubo cardiomyopathy inter-discursively, as a medical condition that the researchers believe is better understood with the help of cardiovascular imaging and bioinformatics, narrative medicine, and participatory art.
The initial research questions this project sought to explore were:
- Which aspects of living with takotsubo cardiomyopathy cannot be captured by the label “broken heart syndrome”?
- Did participants experience their diagnosis as a “biographical disruption” and does that affect their self-representation?
- How can patient involvement clarify the emotional component in the aetiology of this syndrome?
Participants were invited to take part in two creative workshops with distinctive aims and outputs:
Exploring Broken Hearts:
This creative workshop asked participants to reflect on the onset of their condition through manipulation of 3D-printed hearts and poetry discussion (e.g. Margaret Atwood’s “The Woman Who Could Not Live with Her Faulty Heart”). Afterwards the participants were asked to work on self-representation by creating their body maps and writing accompanying autobiographical texts.
Moulding New Hearts:
This creative workshop asked the participants to reflect on their future lives with the residual symptoms of TCM through an embossing activity and poetry discussion. It then sought to help participants to take ownership of their disease by moulding personalized takotsubo vases and writing accompanying fictional texts.
Who are the team and what do they bring?
- Maria Vaccarella (Medical Humanities, University of Bristol) is an expert in pathographical writing and works on the intersection of literature and medicine. She is a member of the steering committee of the Centre for Health, Humanities and Science. Her research explores the genre of illness narratives, with a special focus on non-linear and non-triumphalistic plots. She is also interested in narrative medicine, critical disability studies, narrative bioethics, comparative literature, and graphic storytelling. She has extensive experience of interdisciplinary work, both with clinicians and with patient groups
- Giovanni Biglino (Bristol Medical School) is an expert in Cardiovascular Bioinformatics and Medical Statistics. He has expertise in medical imaging, cardiovascular modelling and 3D printing, contributing to the exploration of TCM morphology; he has experience of working with cardiac patients in the context of public engagement projects.
- Chiara Bucciarelli-Ducci (Bristol Heart Institute) is a renowned expert in cardiovascular magnetic resonance imaging, currently Chair for cardiovascular MRI for the European Society of Cardiology, as well as Director of the Clinical Research and Imaging Centre (CRIC) in Bristol.
- Sofie Layton (Freelance Artist) is an artist with long-standing expertise of participatory arts practices and has worked in NHS contexts including Guy’s and St Thomas’ Hospital and Great Ormond Street Hospital for Children; her work is very collaborative and has been supported by the Wellcome Trust, Arts Council England and the Blavatnik Family Foundation, among others; her practice involves working with peoples’ lived experiences, distilling their stories and finding new forms to communicate experience through art.
What were the results?
The primary outcome of this project were the outputs of the workshops, co-created by participants and team members, which were:
- full scale body maps: to explore participants’ inner landscapes;
- copper embossing: to explore and reflect on one’s imagery, while incorporating it in the
- embossed patterns;
- blindfolded sculpted self-portraits and takotsubo vases: final products of tactile exercises
- with clay to explore one’s body image;
- autobiographical and fictional brief texts: reflective and imaginative elaborations of TCM
- (verse or prose) to be integrated in the artefacts produced.
To ensure a lasting legacy of the project, some of these outputs were showcased in an online permanent exhibition on a website designed as part of this project (together with participants). It provided a virtual gathering space for people with TCM (who are able to respond to the artefacts in a digital guest book) and represents an asset for future work in the area.
The team members wrote two journal articles:
- one for a cardiology journal (on patients’ perceptions of apical ballooning and benefits in exploring cardiovascular morphology creatively)
- one for a medical humanities journal (on patient narratives and on the overall interdisciplinary approach) This was the paper: ‘“Please keep on beating”: Participation in a creative workshop offers unexpected benefits to women with Takotsubo cardiomyopathy’ published in 2022 in the Journal of Patient Experience.