Addressing problem of invisible chronic pain - Friends of the Scotsman

Chronic invisible conditions affect one in seven people across the world, with an estimated 80 per cent of health conditions being non-visiblenote-0.

This can include illnesses that are not noticeable to others, or conditions that are actively hidden for privacy or fear of discrimination. Historically, welfare, care, transport and reasonable adjustments in the workplace have focused on visible disability. However, the psychological impact of invisible illness, or living long-term with such unseen conditions, can be debilitating. This under-recognised challenge requires support across society, including health and social care, education and workplace settings.

At the Royal Society of Edinburgh’s Young Academy of Scotland (YAS) one of our Grand Challenges is to end health inequalities by developing recommendations and interventions that create a more equal society.

YAS has formed a collaboration with Glasgow School of Art (GSA) that led to the Ways of Seeing Invisible Illness Crossover project which explores more tangible ways of understanding people’s experiences of living and working with invisible conditions.

A piece by Jelena Pogodina from the pilot project on positive self-identity through fashion

Crossover is a series of projects initiated by Elio Caccavale and Dr Michael Pierre Johnson at the GSA Innovation School that uses design-led innovation approaches to bring together wide-ranging expertise to identify areas of concern and opportunities for improvement through scientific, health and social advances.

This collaboration makes the most of our collective interdisciplinary knowledge to provide expertise and innovative thinking to identify and tackle the most pressing health challenges in Scotland, and beyond.

Our initial workshop included scientific and health experts, in addition to those working in the areas of design and social sciences. Participants discussed the conditions they wanted to make more tangible and the effects of hidden diseases on individuals and communities. Challenges around invisible illness were identified and ideas were proposed to positively address them. Core themes highlighted included the impacts of stigma due to a lack of understanding; ways to empower individuals to positively express identity with their conditions; and the potential to distribute support needs and awareness across support networks and services in more patient-centered ways.

These ideas seeded two new pilot projects Beyond Stigma & Empathy and Positive Self-Identity Through Fashion. For the first pilot, videographer Enya Fortuna was commissioned to create a short film capturing the experiences of people with non-visible conditions, namely melanoma, multiple sclerosis and hip dysplasia. Each experience provides insight of life with these unseen conditions and how stigma or empathy can manifest in different situations. This revealed how a lack of wider understanding creates challenges in work and life, and what factors can bring about positive change in building a caring and inclusive society.

For the second pilot, Fashion Design students at GSA were commissioned to explore the role of clothing as a medium to understand the complexity of people’s relationships with the invisible aspects of their conditions and as a means of building positive connections with those around them.

This is just the start of bringing these perspectives of invisible illness to light and influencing positive change. Both YAS and Crossover aims to grow more creative collaboration and meaningful innovation on this topic. We thank all participants who contributed their lived experiences to our projects and support from the Biochemical Society and Physiological Society.

Dr Margaret Cunningham and Dr Zahra Rattray, University of Strathclyde; Dr Fiona Kerr, Edinburgh Napier University; Professor Fiona Henriquez-Mui, University of the West of Scotland; Dr Aude Le Guennec, Elio Caccavale and Dr Michael Pierre Johnson, The Glasgow School of Art.

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