#painstories

About the Work #painstories aims to close the gender pain gap, one story at a time. Endometriosis affects 1 in 10 women but takes on average 8 years to diagnose. Women are often asked “how much does it hurt on a scale of 1-10?” But pain is complex, and subjective: qualitative not quantitative. Data is only as good as the questions it asks, the inputs it’s given. Instead of plotting pain on a graph, we asked endometriosis sufferers how their pain really feels. Using their descriptions, we created The Pain Dictionary, a new visual and verbal language for endometriosis pain, brought to life by artists with endometriosis. Turning qualitative data into a diagnostic tool: to express pain properly to doctors, combat low awareness of the condition, and help those suffering without a diagnosis recognise their pain. The dictionary launched on Instagram, putting it at the heart of endometriosis online communities, where many – in response to a medical research deficit – seek solace and information. As a physical book, we’ve put in the places where it can make the most difference: doctor’s waiting rooms, school nurse offices, and in the hands of influencers. Our extensive qualitative research project, The Pain Report, explores the pain gap worldwide through interviews with experts and patients, identifying key diagnostic barriers by asking the right questions. Whilst The Pain Dictionary foregrounds the subjective experience of people with endometriosis, The Pain Report pushes the needle forwards on a cultural and systemic level: one gives us new language for pain, the other shows us why we so desperately need it. The virtual Pain Museum houses both approaches to qualitative data under one roof: telling the #painstories that need to be told, exploring taboos that fuel the silence around pain, and showcasing interviews with sufferers and medical experts.